Hello, folks! Just days after I put up my last blog entry, I received my copies of Autism Spectrum Quarterly in the mail! So, as promised, I am now posting my article, titled "I Can Write, I Can Cook: Asperger's Syndrome, Prenatal Testing, and the Journey to Existence."
I know that prenatal testing is somewhat of a controversial topic, and while it is not the heart of my piece, it does play a strong role in it. The genesis of the piece actually came after a post I'd read on a message board months ago that referred to individuals with Down's Syndrome as "glorified pets." The same person who wrote that also pondered why anyone would want to bring into this world "someone who will never be self-sufficient." Those words pierced me like a blade, as I am not yet what one might define as "self-sufficient," and I wondered then how many people, both in the past and now, have or would call my existence into question because of that. So this piece was born of that fear, that pain, and my desire to redefine what "self-sufficient" really means.
Also, if anyone is wondering, yes, I did write a blog about this, and that blog is what became this article. I've edited it and tweaked it a bit since the original writing, so the finished product is different from the initial blog that I wrote.
So, without further ado, I present you now with my article, "I Can Cook, I Can Write: Asperger's Syndrome, Prenatal Testing, and the Journey to Existence," currently featured in the Spring 2009 issue of Autism Spectrum Quarterly:
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EDITED TO ADD: Here is the original text, for those having difficulty reading the article (I apologize if anyone has had trouble with the jpegs).
"I Can Cook, I Can Write: Asperger's Syndrome, Prenatal Testing, and the Journey to Existence"
by Amy Gravino
Let me tell you a little story.
Then
Many years ago, I attended a meeting. It was one of several, actually, but each one was the same. I sat in a conference room at my old elementary school, my parents on either side of me, and the director of special education at the head of the table. The other faces at the table shifted over time, but those I remember most were the school psychologist and guidance counselor in elementary school, and the speech-language pathologist in middle and high school.
At this particular meeting, I was 11 years old and right in the middle of fifth grade. I knew very little about what the adults around me were discussing, or why I was there. Words like IEP didn't mean anything back then. Only the grass and the long, asphalt path outside the window caught my attention, flanked by the red, yellow, green, and purple-painted walls of the school building. The sun was so hot that I could “feel” the heat radiating off the pavement. The light was so bright that it hurt my eyes, in stark contrast to the darkness in which I sat. My ears strained to listen to the sound of children's voices off in the distance—the sparkling, youthful laughter I longed so much to be a part of, but could not.
What I did not know then was that phrases of abject hopelessness were being whispered into my parents' ears, phrases like—sheltered workplace, special school, will never go to college. I sat there, oblivious to all of this, not having any idea of how little faith the people who were supposed to be looking after me had in my abilities. No one in that meeting—or any meeting before or after—spoke a word to me, or asked me how I felt. Perhaps I would not have been so articulate in my response, but what mattered most was that they acted as if I was not capable of responding at all. How could they know what I could or could not do—or how I felt or what I thought—if they never asked?
Now
I am 25 years old. I’ve graduated from high school, along with the rest of my peers. I went on to college for four years and obtained a Bachelor’s degree in English. I'm now in graduate school working toward a Master of Arts degree in Applied Behavior Analysis. I cook. I shop. I do my own laundry. I drive. I write. I speak publicly at conferences, workshops, and meetings. I tell jokes. I can still fit into my original purple Cabbage Patch slippers from the '80s. I tutor undergrads in the writing lab at school. I'm writing a book about my experiences in the world of relationships and dating. I can program pretty much any electronic device without looking at the instructions. I moved 3,000 miles away from home and lived on the other side of the country for two years. I memorize phone numbers and lyrics to entire Broadway musicals. I travel.
BUT, I do not pay my own bills, and I do not have a "regular job." My parents pay the rent for the apartment in which I’m living in New Jersey. Despite all of the things I've mentioned that I CAN do, I am not (yet) self-sufficient. I can’t help but wonder—is self-sufficiency the standard by which I (or we) are judged?
"Collateral Damage" in the Quest for Prenatal Testing
There are those who advocate for prenatal testing who would look at a person like me, and instead of seeing my accomplishments and all that I’ve achieved, focus only on what I’ve failed to do. They would argue that I should not exist, that I am a drain, both on the economy and on my parents. A waste—at least that’s how it seems.
I have struggled for a very, very long time. Although I have not had to do so explicitly, I have, in many ways, had to fight for my right to have dreams; to contribute to the world; and, yes, to exist. There is no way to describe how I feel when I consider that there are people in the world who would be happy to do away with my existence; that they, or anyone, could feel that because I am not self-sufficient, I should not exist. Those people in that meeting years ago—those so-called experts—believed that I would never be self-sufficient. I admit that I am not there yet, and I have to deal with the constant fear of perhaps not getting there, and the self-doubt that plagues my thoughts from time to time, especially late at night when I’m lying in bed, unable to sleep. But I still have hope that I will get there.
For those who think my thoughts resemble a science fiction film depicting a far-off and dystopian future, consider this: ninety percent of fetuses detected to have Down syndrome in prenatal testing end up being aborted. Individuals currently living with Down syndrome deal with many difficulties, to be sure; but I envy these individuals for one reason and one reason only: the obviousness of their condition. Down syndrome is characterized by an appearance that is visible to the human eye, and because of that, the difficulties of those with the condition are recognized and understood. And while I don't envy the stares that some of these individuals may attract, or the rude comments that they and their families may have to contend with, I applaud their ability to be who they are, no matter what, especially in a world that calls into question their right to exist simply by creating medical tests that all too often result in their eradication.
Unlike people with Down syndrome who cannot hide who they are, I wear a mask of "normalcy." But it doesn't change who I am. It doesn't change the fact that sometimes I feel sickened by myself, and the fact that my parents are supposed to be enjoying their retirement years, instead of continuing to support me. I know that they are happy to do it. But, even so, the guilt persists, and it is exacerbated by the fervent race for medical tests that can detect autism in utero.
I have often wondered if my parents would have aborted me if they had known that I would be born with Asperger syndrome; if they had known that 25 years down the line, I still wouldn't have a "real" job. These and so many other questions are even more difficult to ignore with the rapid development of a prenatal test to determine if a child has autism.
These are complex issues, faced not only by individuals with autism and Asperger's and their families, but also by individuals with Down syndrome and their families. In my opinion, it is a foolhardy endeavor to boil these issues down to a few chromosomes and medical tests, especially when it places many of us with autism and Asperger’s syndrome in the position of having to fight for our right to exist.
Editor’s Note: Amy’s interview by Liane Holliday Willey appeared in ASQ’s CEO column in the winter 2008 issue of ASQ.
My last update came over a month ago, and now Thanksgiving has already come and gone. Unbelievable! And so much has happened since I last posted here. In just the week after the Herstory 12th Anniversary Gala reading, I spoke at two more events: the Special Day for Special Kids at the West Hills Day Camp in Huntington, NY on October 26th, and the New Jersey State Federation of Women's Clubs Annual Fall Conference at the Bridgewater Marriott in Bridgewater, NJ on October 27th. In the weeks that followed, I spoke at a social skills group for adults on the spectrum at the JCC in Manhattan, and then at an Asperger Girls' group at the Faye J. Lindner Autism Center in Bethpage, NY.
Conference-wise, I spoke on the "Transitions to Independence in ASD" panel at Kean University's "Autism: Putting the Pieces Together" conference on November 21st. I had never even heard of the university or the conference until my business manager Nicole told me about it. She had initially asked if I wanted to vendor a table with her, as she was going to reserve a vendor table for her company, Learning By Design, LLC. I readily accepted her offer, and that was when she told me that she'd spoken to the woman running the conference and had told her about me, and now there was a possibility that I'd get to speak on one of the panels. We waited a little longer, and after not hearing back from that woman for a few weeks, I took the reins and sent her an e-mail myself, expressing my interest. She responded, saying that she'd love to have me speak at the conference on the "Transition" panel. The rest, as they say, is history.
Now, this conference was different from ones I'd attended in the past, in that the keynote speaker was a proponent of DIR/Floortime, an autism therapy created by Dr. Stanley Greenspan. In fact, the speaker was his own son, Jake Greenspan. I knew from my classes at school that there is no scientific evidence that validates the claims made by Greenspan. Indeed, there is not one empirically validated research study attesting to DIR/Floortime's effectiveness. But, I felt it best to go into the conference with an open mind, and I had not been shy about mentioning my affiliation with Caldwell College and the ABA program when asking to speak on the panel, so the fact that they wanted me to speak there had to mean that they were willing to welcome other disciplines and those who subscribe to them. That did make me feel more comfortable with being there.
My comfort level slowly started to decrease, however, when in his speech, Mr. Greenspan took a few shots at the methods and practices of ABA. Of course, he made a (thinly-veiled) attempt to disguise the fact that it was ABA about which he was speaking, but Nicole and I knew the truth. Now, I'm not one to take pot shots back at someone, but the whole time I was sitting there, all I could think was, "This guy is saying things, and at the same time, not saying anything at all!" It was baffling. I'd been surprised enough when he first came out onstage; I was expecting an older, bespectacled, somewhat nerdy fellow, perhaps one who wore a brown corduroy blazer. But, Jake Greenspan was, in fact, a hunky piece of man-beef to the nth degree. I was stunned. What was this could-be GQ model doing delivering a keynote speech at an autism conference? It didn't take me very long to catch on, though. He was a figurehead, a puppet for his father sent to represent him and his creation, DIR/Floortime. After all, who better to have standing onstage before an audience than a dashing young man who could easily woo and sway the masses? A very clever ploy, indeed.
Let's get one thing straight, though: this is not about finger-pointing or feuding. There are too many families, too many children and adults with autism spectrum disorders who need help and answers, to engage in petty, childish rivalry. That's what really grated my cheese about Mr. Greenspan's comments; instead of encouraging a partnership, instead of urging differing schools of therapy to work together and cooperate, he furthered an agenda of division and animosity. It's really just sad, because it's individuals on the spectrum who are losing out in the end. I'm not a saint by any stretch of the imagination, but I intend to do my absolute best to rise above trading jabs at conferences and vying for professional or personal glory. That's not what I care about. My interest lies solely with doing everything I can to raise autism and Asperger's syndrome awareness, and to help the people who are here now, fighting to survive in this world. That's what matters most.
A large part of the reason I haven't updated in so long is because on November 5th, I moved from my old apartment in Caldwell to a new one in Upper Montclair. I'm now living with one of my best friends, Dan, who is from Long Island. I feel that where I am now is a major upgrade from where I used to live, both physically and psychologically. Before, I was just renting a room in a house; now, the whole space (a third floor of a house) is mine (and Dan's). It's so relieving to be able to stretch my wings at last, and to be rid of the stressors that plagued me over the last few months. I'm still settling in and getting used to things, and the fact that this move was in the middle of the semester made things really hard, but it's becoming easier, bit by bit. I think this place is going to help me be much more productive, in terms of both writing my book and carving out a career as an autism liaison.
Finally, I have one more thing to share with you all: I'm in print again! I was interviewed by Liane Willey for the Winter 2008 issue of Autism Spectrum Quarterly magazine. Diane Twachtman-Cullen, the magazine's Editor-in-Chief, accepted for publication an article that I wrote (it'll be in the February 2009 issue), and asked if I would want to be interviewed by Liane for the "C.E.O." (Celebrations of Excellence and Originality) column, as a lead-in piece. I readily agreed, and the issue is now finally in print. I haven't received my hard copy yet, but my parents got theirs a few days ago, and I had my dad scan the article so that I could disseminate it around the Interwebs (and I will do the same when the February 2009 issue comes out). So, here it is! (Click on the images to make them bigger.) If the thumbnails don't work, click here and here to read the article.
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I am very happy to announce that "Miss Peach Strikes Out," the article I wrote for the ASCEND Fall 2008 newsletter, has finally been published! I received several copies of it in the mail courtesy of Deirdre Wright, the founder of ASCEND, whom I met at COSAC's annual conference in Atlantic City this past May.
So, without further ado, I am proud to present my article, "Miss Peach Strikes Out," and a sidebar that I also wrote, "The Naughty Autie's Top Five Dating Tips for Girls with Asperger's Syndrome," both of which are featured in the Fall 2008 of the ASCEND Newsletter.
Cover (my article title is circled in red):
Centerfold!
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~*~
In other news, I am also excited to announce that another article I wrote, "I Can Cook, I Can Write: Prenatal Testing, Asperger's Syndrome, and the Journey to Existence," has been accepted for publication in the February '09 issue of Autism Spectrum Quarterly magazine! I am also being interviewed by Liane Holliday Wiley in the "C.E.O.: Celebrating Excellence and Originality" column for the November '08 issue, as a lead-in piece. So I will post links to the articles here as they become available. Don't forget to look for the hard copy issues on newsstands, too!
In terms of public speaking engagements, I have several events that are occurring this month. On October 19th, I will be performing a reading at Herstory's 12th Anniversary Gala Luncheon at the Charles B. Wang Center at Stony Brook University in Stony Brook, NY. On October 26th, I am facilitating a workshop for parents of children on the spectrum at the Special Day for Special Kids event at the West Hills Day Camp in Huntington, NY. Finally, I am scheduled to speak at two social skills group meetings at the JCC in Manhattan; one on October 21st, the other on November 4th. I'll also be co-chairing, along with my business manager and friend Nicole Turon-Diaz, a vendor table at Kean University's "Autism: Putting the Pieces Together" conference on November 21st. There is also the potential that I may be speaking at the conference. I'll be sure to let you all know how that pans out.
This bears little repeating, but, I (obviously) have quite a busy schedule ahead of me these next few months. I'm also going through a bit of personal turmoil at the moment, trying to find a new apartment in which to live with my friend Dan, as my current situation is coming to a close and I'll need to move out of here soon. Sigh. So much to do, so little time. I'll see you folks at the next bend in the road.
On July 31st, I heard back from two literary agents who were reading over my book proposal. Now, I didn't actually mention one of them on here because I didn't want to jump the gun, and it's a good thing that I didn't. At the beginning of July, I received an e-mail from Christopher Schelling, who is the literary agent of John Elder Robison, author of Look Me In The Eye, and of his brother, Augusten Burroughs. I was stunned to hear back from Mr. Schelling--I thought for sure that I was going to get a rejection flat-out. But instead, he asked to read my book proposal. Flabbergasted, I emailed him a copy immediately, and he finally wrote back to me last Wednesday night.
Unfortunately, it wasn't with good news. He said that from the title of my book and the description, he was expecting more of a humor book instead of a memoir, and he didn't have enough material dealing directly with the subject of Asperger's and sexuality to understand what I am trying to do with the book. He also said that he wasn't sure if he could find an editor who could market it correctly, and so he's stepping aside to let another agent have a try with it. Naturally, I was depressed after I read his message. I thought, "Oh my God, I'm marketing my book completely wrong. How incompetent and idiotic am I? Nobody's ever going to want to take me on." I mean, the book is supposed to have humor in it--it deals with serious issues in a humorous light, so as not to make everything all doom-and-gloom. My writing has been described as Ernest Hemingway crossed with Erma Bombeck--that's where the serious-stuff-made-seriously-funny thing comes into play. But, it seems that Mr. Schelling didn't quite pick up on that, which is okay, and I'm still very grateful that he did get back to me and offered some great advice and suggestions. So I'll be writing back to him soon with a few words of thanks.
What pulled me out of the funk induced by his e-mail, however, was another e-mail that I received just half an hour later, this one from Liza Dawson, the literary agent with whom I met in the city on July 1st. First of all, I could not believe that both of them got back to me on the same night, within forty minutes of each other, no less. I swear, it's as if these people have some kind of mind-melding, telepathy thing going on or something. Anyway, Liza said that she liked my first chapter, but wasn't 100% sure that the structure I'd laid out for the book was right for it. She asked if I had some additional material that I could send to her, and said that she looked forward to hearing from me soon. So, I consider that a pretty good sign, if I may say so myself. She didn't say, "Oh my God, I loved it, I want to take you on right now!" but she didn't flat-out reject me, either. That's the only frustrating part, is that I'm not sure if she definitely does want to take me on, or isn't planning on having a final decision until she has more of my material in hand. It's nerve-wracking, to say the least. But, luckily, my summer class has ended, and Liza's going to be away until tomorrow, so I'm working on something that I hope to get to her by the time she returns. In the meantime, I'll keep my fingers and toes crossed that this might mean that we've moved on to the next step of the process.
In other news, I recently submitted an article to the newsletter for ASCEND, the Asperger Syndrome Alliance for Greater Philadelphia. I met Deirdre Wright, the founder of ASCEND, at COSAC's annual conference in May in Atlantic City, and she expressed an immediate interest in me speaking at their spring conference next year. We exchanged contact information, and a short time after the conference ended, she e-mailed me to ask if I would be interested in being paid to write an article for their Fall newsletter. I readily agreed, and also wrote a sidebar to accompany the article. The article itself deals with relationships and dating from the perspective of a woman with Asperger's syndrome, and the newsletter will be out in approximately a month, at which time I will post a link to it here and the full text of my article.
I also received a phone call from Charlene Schermer, who was referred to me by the Gersh Academy, where I gave my keynote address in June. Ms. Schermer is the Executive Director of the Custom Education Foundation, and is coordinating an event in October called "Special Day for Special Kids," which is being held at the West Hills Day Camp in Huntington, NY. It's an event where children with autism, Asperger's, Tourette's syndrome, and other neurobiological disorders can engage in fun, safe activities while their parents sign up for and attend informative workshops. Ms. Schermer asked me if I would be interested in running one of the workshops, and I accepted. I'll be running a 45-minute workshop on Asperger's and transition: Life in college. My presentation will run for half an hour, and I plan to allot 15 minutes for questions. It's unpaid, but the level of exposure is sure to be high, and I'm just plain excited to be running my first-ever workshop. If I can truly help even one person who attends, then I feel that I will have done my job. I'm really looking forward to it.
In addition, I've just completed a summer course in Developmental Disabilities, which adds three more credits to my Masters degree that I am working to obtain at Caldwell College. I received an 'A' in the class, but even better than that, earned 19.5 out of 20 points on a group presentation that I did in class on Asperger's Syndrome and Social Skills. My group partner, a lovely young woman who is a special education teacher, was speaking to a speech therapist friend of hers about our presentation, and the woman asked her right out if we would be interested in presenting our presentation at her school as part of a professional development workshop for the faculty. My groupmate called me to tell me the good news, and asked if I would be interested, and I responded with an enthusiastic affirmation. So, we will see what happens with that over the coming months.
Finally, I received two other public speaking offers. One came from a woman in my summer class, who told me that she spoke to her supervisor about me and showed her my business card, and her supervisor is now interested in having me come to speak at their school as part of a professional development workshop. The other offer came from a woman that I know from high school, who works in a program affiliated with Catholic Health Services, and she, too, asked if I would be interested in speaking to some of the staff at one or two of their locations on Long Island as part of a professional development workshop.
So many things are in the works right now, and I must say that I almost feel a bit overwhelmed. I'm beyond excited that things are picking up, though, and as I mentioned in my previous entry, please don't hesitate to contact me about a potential public speaking engagement or workshop. My services are slowly starting to become more in-demand, so book me for your event while I still have some free space on my calendar! :)
