Saturday, February 27, 2010

The Beat Goes On...

I've got more news to share with you, my fine-feathered blog readers. As you may recall, I mentioned that I was waiting to hear from the Autism Society of America in regard to a proposal I sent in to present at their annual conference in Dallas this year. Well, I finally got a response, and it seems that my proposal was not accepted. I'm disappointed, to be sure, but I have remained optimistic, because I know I can always try again next year.

You may have heard the old saying, "When one door closes, another one opens." I've never put much stock in this idiom, though I have seen it happen to others. But something that happened to me recently made me into a true believer.

Not two days after receiving the rejection from the Autism Society of America, I got an e-mail from Pat Schissel, president of AHA-NY, whom I've known for a very long time. In the e-mail, she asked me to be a moderator for a panel at AHA-NY's annual Spring conference in May! Well, I was ecstatic as can be, and I readily accepted her offer. It's as if that was waiting for me all along and I just had to experience the bad before getting to the good.

In addition, I also got to do a radio interview last week on the Strange Dave Show. I was caught quite off-guard when he e-mailed me to request the interview, but happy that I was able to talk about autism and my public speaking career (as well as the Monkees, which is what became the focus of the interview as it went on). If you're interested in listening, click here (click ahead to the 36:25 mark, as that is where it begins).

Finally, this past Wednesday (February 24th), I attended a "Think Tank" at Autism Speaks' headquarters on Park Avenue in NYC. The purpose was to discuss the Community Life issues from the AFAA Town Hall meeting that I attended in November. Linda Walder Fiddle had asked me to be a part of this, along with Michael John Carley (Executive Director of GRASP). There were six of us in attendance altogether--Michael, Linda, Lisa Goring (Director of Family Services at Autism Speaks), Peter Bell (Executive V.P. of Programs and Services), and Dr. Gary Mesibov (Director of Division TEACCH) who conference-called with us from North Carolina.

I had felt some trepidation about going to Autism Speaks for this event, as it was like walking into the belly of the proverbial beast. I didn't know what it would be like--if I would be pandered or condescended to, in a sense, or relegated to the corner and not permitted to speak at all. Luckily, neither of these ended up being the case. I was quiet in the beginning, trying to absorb all that was going on (the echo from the speakerphone didn't help matters), and then once I felt more at ease, I began to share my thoughts on different topics.

Having Michael and Linda there was a tremendous help, of course, and soon I was speaking passionately about the need for certain services or pieces of legislation that could be drafted to answer this problem or that concern. As little expertise as I have in the legal field (very little), I was still able to offer my ideas and have them not only received, but also lauded.

I know there is a great fracture between several parts of the autism community and Autism Speaks. Maybe some spectrumites will see me as a Benedict Arnold type for going onto "enemy territory." Yet I feel like the best way to enact change and bring our perspectives to Autism Speaks is to do just that. Even though my opinions were met with enthusiasm and respect, I am well aware that this hasn't been the case for many others on the spectrum. With these efforts, I'm hoping to change this, to show Autism Speaks the value of the input those of us on the spectrum have to offer.

After the meeting, Linda and I went over to Bergdorf Goodman, a high-end department store on Fifth Avenue. I had always dreamed of having lunch in their restaurant on the 7th floor, with its astonishing view of the park and high-backed chairs that looked like something out of a fairy tale. All of these thoughts swirled through my mind as I sat there nibbling on perfectly seasoned pieces of toasted lavash. There really is so much work to be done, and at that moment, the reality of how this is going to be what I'm going to do for the rest of my life sunk in.

I don't mind, though. On the contrary, I find it to be the most satisfying and important work I could ever do. My Masters thesis, which I am in the midst of as we speak, is also going towards that effort, as is my book, "The Naughty Autie." Every article I write, every presentation I give and public speaking gig I do is a part of it. Though I've only just begun to do this, the Asperger's syndrome college coaching is most definitely a part of it.

In a lot of places, awareness still needs to be raised. One thing I told the members of the Think Tank is that before anything else can be done, any laws enacted or programs funded, people have to know what the heck autism and Asperger's syndrome are. Awareness is paramount. Linda told me of a community where they're looking to construct a low-income apartment building for people with Asperger's to live in, and the folks in the community are fighting against it. Interestingly, it's largely a black community, and given the discrimination these individuals have no doubt faced, you wouldn't think they would turn around and do the same to another group of people.

It's all about fear. People fear what they don't understand and don't know, and that's what's happening here. These people think that individuals with AS are dangerous, somehow, or criminals, or God knows what. Linda asked me if I'd want to go speak to the community in April, to explain what Asperger's is and hopefully abate their concerns so that the plans for the building can move forward. I readily accepted, because the prejudice against those on the spectrum disturbs and saddens me, and knowledge is the first step to eradicating it.

One concept that was brought up at the Think Tank was the idea of autism apologists, of how many people on the spectrum have a hard time getting services because the economic costs make them feel they have to apologize for needing these services. I mentioned how this is interesting because I have been told by many of my friends that I tend to over-apologize for things. It's the result of a lifetime of constantly being made to feel that I am always wrong. It's taken me so many years to finally look the world in the eye and say:

"I'm not sorry."

I have grown so tired of being sorry for the way that I am. For who I am. Too many years of my life were spent walking with my head down, never seeing what was going on around me. You miss a whole heck of a lot when you go through life like that, and no one--on the spectrum or not--should have to feel that way. So I expressed to the Think Tank that no one should have to be sorry for who they are and needing the services and supports that would help them to get along better in this world, and, ultimately, be successful in it.

As simple a statement as "I'm not sorry" is, it distills a greater idea into a succinct, direct thought, which is exactly what's necessary in today's sound byte world. My great hope is that it becomes more than a sound byte, however, and moves the hearts and minds of persons whose seat of authority grants them the power to make real, broad changes in the lives of individuals on the autism spectrum.

Well...that's about all I've got to say for now. On deck for my next entry is a look at Asperger's syndrome and food--what my relationship to food used to be, what it is now, and how it's changed so dramatically over the years. It's the story of an impossibly picky eater who turned into a veritable gourmand--and for whom cooking has become her first-ever "perseverative interest."