Tuesday, January 19, 2010

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!