Masters Thesis and Much More

Oh, good heavens, I've done it again. I have let time get away from me and neglected to update this blog. My apologies, faithful blog readers!

So where do I begin? Well, on November 13th, I participated in a National Town Hall Meeting put together by AFAA (Advancing Futures for Adults with Autism). Linda Walder Fiddle had asked me if I would be willing to participate as a self-advocate, and I readily agreed. The meeting was held at a central location in Chicago, but there were about 15 satellite locations all across the country, one of which was in Newark, which I attended.

The meeting was unlike any other that I'd been to, devoted entirely to issues faced by adults on the spectrum and their families and caregivers. In the very beginning, we were given keypads, which we were told would be used for voting purposes throughout the day. The first poll taken had to do with demographics, and the questions were the same as they'd been on the registration form we had to fill out.

One question asked what your relationship to autism was, and one of the choices was "Individual on the Spectrum." I chose that option, of course, and waited anxiously to see what the results would be, as after each question we were shown the percentages for each answer, from all the votes cast in at all the satellite sites.

It was no surprise that the biggest groups of attendees were parents and professionals, and the percentages reflected such. The percentage of attendees on the spectrum? 7%. That's seven percent, out of the just over 1,000 participants at all of the meetings nationwide. It's...not really a terrific number, to be honest. I am very glad that there was a spectrumite presence at all to begin with, but it just seems rather low, and I hope that the number will increase greatly at future meetings.

There were three categories that we discussed: Housing, Employment, and Community Life. Each category had a list of issues within it that we talked about with the people at our table, and a transcriber would write down the things we said on a laptop. At the end, a vote was taken as to which issue should have the highest priority on a national agenda (from a scale of "Not Important to Include" to "Must Include"). We were also able to suggest an issue that wasn't on the list and possibly get it added so it could be voted on.

In the Community Life category, I was dismayed not to see any mention of "helping adults on the spectrum develop and maintain healthy interpersonal and sexual relationships," and so I voiced this to our group. Imagine my surprise and delight to see that it wound up being added to the list of issues! When the vote was taken, 71% of the attendees chose the issue as "Important to Include" or "Must Include" for a national agenda!

I don't know for sure that it is because of me that it was added to the list, but it seemed too strange of a coincidence for it to be otherwise. I was even more excited when the issues were weighed against each other (so people voted for which one was most important for a national agenda). "Helping adults on the spectrum develop and maintain healthy interpersonal and sexual relationships" came in at #4 out of the five issues. This didn't bother me so much as what was selected for #1: "Educate first responders about the challenging behavior that might arise in dangerous situations involving adults with autism so that they are prepared to handle these occasions in the safest and most effective manner."

Given that most of the participants in the meeting were parents/family members or service providers, I suppose it isn't too surprising that that's what was picked. But I highly doubt that individuals on the spectrum themselves would have chosen that as number one. It also smacks of "about us" instead of "with us"; that is, that the priority is still "determining what to do about us" instead of "talking with us about what we want and need." I'm not saying that this is what the people there thought or felt, but it is the feeling I get when I see such an issue chosen as a "top priority" for a national agenda.

Aside from that, though, the meeting was very productive, and I was glad to have attended. I do hope that the number of people on the spectrum will go up at future meetings, because that representation is so crucial for those not on the spectrum to understand where we're coming from. One of the warm-up questions we had to answer to get acquainted with our tablemates was, "Why did you come to this meeting?" My answer was, "To be a voice for those who don't have one." Going by the attendance figures, there were sadly quite a few. I just hope that I did them proud.

It's been a little over a month now since I defended my Masters thesis. Yes, I did indeed finally reach that point! I worked tirelessly on my proposal, trying to tweak and modify my study to make it as good as it could be. I came to the campus armed with homemade food for my committee (roasted, marinated bell peppers; a cold antipasto platter; an herb-leek tart; and brownies). Any nerves I'd started to feel as I set up my presentation abated as I stood there facing my professors, waiting to begin, because I knew at that moment that I was as ready as I would ever be.

The final verdict: Approved, with Major Revisions. What does this mean? Well, I'm going to have to make some significant changes to my study. The committee made some excellent suggestions, and so my thesis chair and I are going to try to use those to make the study stronger. I'll have to defend my proposal again, probably at the end of this month or the beginning of February. I don't particularly mind this, but I just want to be on good footing when that time gets here.

Another exciting development that's occurred is that I have been approached to act as an AS college coach for a few individuals who have Asperger's syndrome. Dr. Shana Nichols, co-author of Girls Growing Up on the Autism Spectrum, wrote to me to tell me of two young women that she is working with, and asked if I would be interested in working with them in my capacity as a certified AS college coach. I was beyond thrilled to be asked, and so of course, I said yes.

I've said it before, but it bears repeating: I want to be an Asperger's syndrome college coach when I graduate. I know that most colleges and universities don't even have such a position, and so I don't doubt that I will have to create it myself where I may end up being employed. For the time being, though, coaching privately seems like an excellent way to gain experience, the sort of experience that might help me get my foot in the door at a college or university. Most importantly, however, getting to do this will allow me to achieve my ultimate goal, which is to help people on the spectrum.

(And since this is my blog, I'm going to indulge in a little shameless self-promotion now: If you, or a family member, or client are in need of an Asperger's syndrome college coach, I am available for hire! My rates are flexible and can be modified based on individual financial need. For more information, please contact me privately at AGrav3230@aol.com, or contact my business manager, Nicole Turon-Diaz, at learningbydesign@verizon.net.)

Finally, in book-related news, I've decided to send a proposal for The Naughty Autie to Future Horizons, as the woman there, Kelly Gilpin, has previously expressed interest in it. It's high-time that I did something, though, and if I don't publish my book this year, I feel as though I will have missed the boat altogether.

In addition, the book, coupled with my Masters thesis study and a third documentary that I've been approached to appear in (it's called Desire and is also directed by Keri Bowers, the woman who did ARTS and co-directed Normal People Scare Me, and is going to be about people on the autism spectrum and relationships and sexuality), will really create a more complete picture of what it is I represent and what I aim to do to promote a better, brighter future for adults on the autism spectrum.

Well, I think that's about all I've got for now. I'm nervous with anticipation because this week I should be hearing from the Autism Society of America, to whom I submitted a proposal for their annual conference that's going to be in Texas this July. So look for more details about that in my next entry!

Articles, Workshops, and More Book News

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! :)

Book News + Gersh Academy Graduation Speech

Got a few bits of news to share: First, I've finally started sending out query letters for my book. It took me a really long time to get to this point; the excuse I would give would be that I had too many others to do. In truth, I was afraid. Writing and sending out these letters means that this has all become real, that it's not just me talking about writing a book and getting it published, but actually going through the motions of finding an agent and a publisher, of sending my project out into the world to be judged.

I've sent out seven query letters in total, and gotten back two responses thus far, both of which were rejections. Which--to put it plainly--really sucks. Don't get me wrong, though; I fully prepared myself for this. Rejection is a large part of the publishing industry, and I'm lucky that I even got the responses that I did. Both agents who wrote back to me were very kind, and offered words of advice and encouragement. All some people ever get is a rejected stamp. So I'm fortunate in that regard. The one agent made a good point, actually; he said that he wasn't head-over-heels in love with my book proposal to see it as part of his list, and both he and the second agent who wrote to me emphasized the importance of finding an agent who absolutely loves your idea and is dedicated to getting it published. I'd much rather have an agent who is passionate and excited about my book, instead of one who is just "eh" about it. So, onward I go, hopefully to bigger and better things.

Second item of business: the Gersh Academy graduation. As I mentioned previously, a few weeks ago, I was asked to speak at a high school graduation for the Gersh Academy, a school in Hauppauge out here on Long Island for kids with autism, Asperger's, and other neurobiological disorders. I wrote up my speech earlier this week and sent it to the woman with whom I'd met, on her request, so it could be reviewed by her and the Board. She also sent me a copy of the graduation program, and that's when I discovered that I had been given the title of Keynote Speaker. Keynote Speaker. Me! How about that?

Anyway, June 27th was the big day. I arrived at the school at 10:15am, and the ceremony began shortly after 11. I was the last person to speak, but you know the old saying about saving the best for last? Well, there you go. Don't think I'm saying that out of pure ego, however. I'm only saying it because almost every person in the audience came up to me after I delivered the speech and told me how inspirational it was. One woman even said that it made her think about how she'd behaved in high school, and whether she could have been a little nicer to those who were different or who didn't run in her social group. The best compliment of all was when one of the graduates told me that he loved my speech. He and the others were whom I was hoping to reach, and it looks like I did. So yay me. :D

In addition to my speech at the graduation marking my first-ever keynote address, my father was able to record it using our new videocamera. The audio is a little wonky in the beginning, but it gets better as it goes on. So, without further ado, here is my keynote address from the Gersh Academy 2008 graduation:

Speech Transcript:

Good morning distinguished guests, family members, friends, the faculty and staff of the Gersh Academy, and of course, the graduates of the class of 2008.

When I was asked to speak here today, I immediately thought of my own high school graduation seven years ago. I remember being forced to listen to a speech given by our class valedictorian, in which she described school events and parties that “everyone” had attended. In truth, her speech excluded me and so many others who had never gone to any of these events, rituals of youth that we were supposed to be remembering fondly yet had never actually happened.

So I knew that I had a responsibility to you, to talk to you about something to which you can relate, something that affects your lives right now, today. I wanted to be able to give you the speech that I wish I could have heard all those years ago. A speech that spoke to me, a young person on the autism spectrum, specifically Asperger’s syndrome. An outcast.

“Finally, the answer” is the motto of the Gersh Academy, which I discovered by perusing your school’s website. But before any answer can be given, first we must know what the question is. You stand here on the verge of adulthood, getting ready to head out into the real world. The team you’ve relied on during your years at the Academy—teachers, therapists, 1:1 aides—is now shifting, and your parents and caregivers will become the primary “team” in your lives from now on. But as you make your way through the world of higher education or the workforce, you will begin to speak for yourself, to tell people who you are. And that is what the question is: Who are you?

When I graduated from high school, I was not Amy Gravino. Amy Gravino did not yet exist. There was only a shell, fragments of self-esteem lying in shattered pieces after being chipped away at for years by my fellow classmates. I was whatever they said I was—if they called me ugly, I was ugly. If they said that I was a freak, I was a freak. I was defined by how they saw me. And though I had my parents to tell me differently, the words of my peers carried far more weight, making any other positive affirmations almost impossible to believe.

The journey of discovering who I am started to take place when I went off to college. Slowly, the pieces were picked up. Slowly, I began to realize that I wasn’t in high school anymore, that I no longer had to be ugly or a freak, and my confidence grew. Slowly, Amy Gravino began to emerge.

Getting to that place, to that point where I started to find out who I was, took a lot of effort and hard work. For so many years, no one believed that I was going to be able to do anything. They said I wouldn’t go to high school, wouldn’t graduate—in short, I wouldn’t amount to anything. I learned at a very young age that the world is not an accommodating place, and I fought for the right not only to follow my dreams, but to even have them at all.

Your years here at the Gersh Academy have benefited you immensely, and perhaps the most significant benefit of your education here is that this school has given you the tools to hopefully one day lead an independent life. That is perhaps the greatest desire of your parents, caregivers, and the teachers and others here who have nurtured you and watched you grow: to see you succeed in life. Success comes in many forms, however, and the support and guidance given to you by this school is dedicated to your personal success.

But the day will come that someone will ask you the question I mentioned earlier: Who are you? This is where perhaps the most powerful tool you can have comes into play: self-advocacy. Self-advocacy is an invaluable asset, not just for individuals with neurobiological differences, but for everyone. Those of us who are a little bit “different,” however, have to work twice as hard to make our voices heard. I can remember well sitting in on IEP meetings in elementary school, surrounded by adults all discussing my future (or the very possible lack thereof). You would think that my presence would ensure an opportunity for me to speak for myself, even for a moment. But I didn’t. No one ever asked me how I felt, or what I wanted. Even if they had, I’m not certain that I would’ve been able to tell them.

Many years have passed since then, and I am happy to say that I have become a strong self-advocate, loudly and proudly proclaiming my “difference,” and I now see it as a strength, a high mark of character, rather than a weakness or flaw. Your disabilities have presented each of you with challenges, and the people at this school have worked with you to face those challenges. Now, as you head into adulthood, you are starting to find your own voice, and becoming a self-advocate, learning the skills to articulate your needs and feelings will enable you to use that voice to tell the world who you are.

The last thought I’d like to leave you with is this: You have worked so hard and for so long to get where you are at this very moment. Surrounded by your friends, loved ones, teachers, and therapists, it seems hard to believe that your life as you know it is about to change completely. But rather than seeing this day as an ending, you must also look at it as a great beginning. I once sat where you are sitting, and as angry as I felt listening to that valedictorian’s speech, my face also burned with shame over the fact that I’d failed at having the “typical” high school experience. I could clearly see what was ending, but I had no idea what was about to begin. Leave yourself open to endless possibility, and take with you the lessons you have learned and the guidance you have received here at the Gersh Academy. I wish you all the greatest of success in your future endeavors, and I thank you for allowing me to speak to you today. Congratulations to the class of 2008. Thank you.