Monday, December 29, 2008

This is the Voice In Your Head Speaking...

Something occurred two weeks ago, and it's been bothering me since it happened. Not as much now as it did then, but it still weighs on my mind. On December 15h, I spoke at an Asperger Women's group at an autism center on Long Island. Over the last few months, I'd been corresponding via telephone with the woman who runs the group, trying to find a date that worked for me to come in and speak to the group. She seemed like a nice enough woman, and I was happy to have been asked to act as a guest speaker. When I got there, however, it was a different story.

I first went into the woman's office so we could discuss what I would be talking about in the meeting. She and another woman who co-runs the group were there, and at first, they seemed perfectly nice and eager to have me speak to the group. But the primary woman kept insisting that I say something to the women along the lines of how I was told that I could join the group, but felt that I wouldn't be able to because of the distance, and so I chose to speak at it instead. I understood her reasoning for this after she told me that the women in the group questioned why I was speaking to them instead of being a member myself. That made sense to me, to try and appeal to the women and not alienate them, but I couldn't and still don't understand why this woman seemed to be treating me as though I were like the other women in the group, and not someone who'd come to speak to them.

I need to explain that last part more clearly, because I know it sounds strange the way that I said it. I do not, in any way, shape, or form, think that I am better than the women who are in that support group. The reason that I no longer attend support group meetings is because I never really felt like I fit in at them, and although they did serve a purpose at one time, I am no longer at a point in my life where I would need a support group as that type of resource. I have friends with whom I speak and share my triumphs and woes, not to mention the fact that I also tell my parents pretty much everything. So I'm no longer at a juncture where a support group would be of great assistance to me, but in no way am I demeaning the value of the group to these other women. I would rather another person be in the group instead of me, if they could get more out of it and have it be more useful to them than it would be to me.

That said, I tried explaining all of this to the woman, but I don't know if it really got through. She kept saying to me that I should tell the women how I still have my own issues to work on--which I do, this is true, and I can understand it being said for the purpose of inspiring a spirit of camaraderie and friendship--but I felt like her point in saying it to me was for a different reason. She just kept reminding me that I'm "one of them" ('them' being the other women in the group) and that I could come to a meeting anytime to work on my issues. Weirdness abounded as her repetition of the phrase grew, and I became ever more uncomfortable.

I know that I'm not what one might call an "authority" on anything. I have no capitalized letters after my name, nor any really notable accomplishments to speak of up to this point. But why on God's green and verdant landscape would she ask me to speak to this group of women if she didn't think I had something to share with them? If she didn't think that I've achieved something that they haven't? If I really am "one of them," then I should be sitting in that group engaging in what certainly felt like organized and staged dialogue; conversations facilitated by neurotypical puppetmasters. If there's one thing I despise about any support group that is run by individuals not on the spectrum, it's that: the almost plasticine need to force conversation between the group's participants. Their intentions are all well and good, to be sure, but it still irks me to have to listen to their tones of voice sounding so
faux enthusiastic.

Maybe I am reading too much into this and misunderstanding it all, as per usual. But my encounter with that woman has made me question everything about myself and my so-called "expertise" as a public speaker. The truth is, when it comes down to it, the most important thing isn't what that woman or any other group facilitator thinks of me; the most important thing is if I was able to reach the participants in the group, if I was able to make sense to them and help them in some way, even a small way. I've never encountered a situation like this before, where I felt a sort of lack of respect coming at me from the facilitator of a group. I know that I'm on the spectrum, but I'm there speaking to other women who are also on the spectrum, and frankly, I think I'm better equipped to be running that group than that woman was. Call it blasphemous or crazy if you like, but how or in what way could she know how to talk to those women or get them to open up better than I could? I don't know. I just don't know.

I fear now that perhaps I am not being taken as seriously as I thought I was; that teachers in schools or support group leaders don't see me in the light that I thought they had. The director of Special Ed in the Port Jefferson school district hasn't contacted me since I waltzed into his office over the summer with my
curriculum vitae. Yet, I heard from my father that a woman he ran into recently (who used to be the tenant in our old house that we rent out and who was one of my nurses in elementary school) had herself run into this man, and he'd been raving wildly about me. Maybe I'm a little slow on the uptake here or not quite understanding this all clearly, but I don't see how the guy could be raving about me when he hasn't spoken a word to me, electronically or otherwise, since August. Sigh. Respect, people. I don't think it's too much to ask for.

In other, far more random news, I got straight-As this semester (I got an A- on my research proposal paper, which is going to be the foundation for my actual thesis next year) and my GPA is up to a 3.53. I also have received news that the
ARTS documentary that I'm in is locked and finished, and will be out on DVD in mid-January. So look for more tasty tidbits on that in here as I find out more info. I've also gotten back in touch with the literary manager in Los Angeles with whom I worked on ARTS, to seek her assistance in breaking into the world of television, and she's agreed to help me in any way she can. So, while I may not quite be ending 2008 with a bang, I think 2009 is going to get off to a rollicking good start. I'm just tired of things happening on other people's terms rather than my own, and so I think 2009 is going to be about making that happen. I just wish these bumps in the road with doubting myself and my abilities would go away for good. All in good time, I guess. All in good time.

Wednesday, December 3, 2008

Controversial Conferences, An Interview, and a Really Big Move

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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