Friday, June 18, 2010

Pity, Party of None

This is a comment that I made yesterday on Facebook, in response to comments I saw posted by someone with Asperger's Syndrome. She was frustrated because she just graduated from law school and doesn't have a job, and felt that the world had screwed her over.

Her comments belied a bitterness towards the world because of abuse she's suffered over the years and a general resentment towards having autism. She was basically feeling sorry for herself and saying that no one would try to treat her this way if she didn't have autism, and she was angry that no one "had the guts" to stand up for her. So I felt a very great need to respond to all of this, and this is what I wrote:

"Sometimes, when no one else will stand up for us, we have to have the guts to stand up for ourselves. Do you think there are any of us who HAVEN'T had the 'system' fail us? We are living and trying to be successful in a world that isn't designed for us, and yes, it sucks. But complaining and wallowing in self-pity accomplishes nothing except proving them right--that we are "damaged," "useless," "pathetic"...any of the names that I myself have been called and I'm sure others have been, too.

I know it's hard, but you have to stop listening to their voices, the voices that condemn you to failure, and listen to YOUR voice--the voice that says "I graduated from law school. I kick ass!" I mean, that's a HUGE accomplishment, and it says so much about you that you fought against those long odds and persevered and got that damn degree, despite what anyone said.

People told my parents I'd never go to a regular high school, let alone college, and that I'd work in a sheltered environment. This year, I'm about to graduate grad school with my Masters degree in Applied Behavior Analysis. I'm a writer, a public speaker, an activist and advocate for all people on the autism spectrum. I have had the fortune to have my voice heard, and so I especially try to represent the people whose voices haven't been heard. I know your frustration and your pain so well because they were once my own, too.

It would be very easy to use my diagnosis as a crutch--when I was younger, I used to say, "It's not my fault...I have Asperger's Syndrome." But blaming everything on the disorder is just as bad as not wanting it to exist. It's not all of who you are, but it's a part--a part that can either be negative or positive. And people that would abuse or try to take advantage of you don't do so because you have autism--it's because they perceive that you are vulnerable and not someone who would stand up for yourself. But if you do, if you have confidence and believe in yourself, they won't be able to push you around.

For me, having Asperger's Syndrome was once all negative, but rather than being crushed under the weight of it, I've used it to try and make a difference in the world. Look at it as an asset--a perspective that you have that NO ONE else does. With that and your law degree, I know you can change the world, too, and help to ensure that no one ever goes through what folks like you and I have gone through, ever again."

Wednesday, June 16, 2010

Participants Wanted for Research Study!

Hi, Everyone!

I'm currently attempting to get my thesis study underway, and as such, I am need of participants! Please see the Call for Participants below (you can also find it on the Facebook page of Autism Speaks, here: and forward this to anyone you think might be interested. Thank you!


I am currently recruiting males over the age of 18 with a clinical diagnosis of Asperger's Syndrome for a study to teach how to ask someone out on a date. All volunteers will be required to have their own transportation and must be able to come to Caldwell College (located in Caldwell, NJ) three to four times per week. The study is expected to begin on June 21st and last for approximately three weeks. If you are interested in participating in this research, please contact Amy Gravino at Thank you!

Study Participation Criteria:

- Must be over the age of 18
- Must have official Asperger’s Syndrome diagnosis from an outside agency or clinic
- Must have transportation and/or live in the NYC/northern New Jersey area.
- Minimal to no previous social skills training
- Must have at least two to three unsuccessful previous attempts at asking someone out for a date.

Monday, June 14, 2010

Interview on NY Talk Radio!

Last night, my friend/business manager Nicole Turon-Diaz told me of a radio show called "Your Beautiful Child" on NY Talk Radio in Tribeca that she was going to be interviewed on today. The show addresses issues faced by parents of individuals with autism spectrum disorders, and Nicole was being interviewed about her organization, Learning By Design, and her upcoming collaboration with Joey Travolta on a summer film camp for kids with special needs.

Initially, Nicole asked if I would call in to the show, but when I told her that my meeting with my professor had been moved from today to Wednesday, she asked if I wanted to accompany her into the city and be on the show itself! I was quite surprised by this, but readily agreed.

So, we drove into the city today and met up with Shane B. Kulman, the woman who is the host of the show, for brunch at a restaurant in Tribeca called Bubby's. We discussed what would be happening on the show and what it would be like, and I found myself very excited for what lie ahead.

It was truly quite an experience, and so much fun. The show wasn't taped in your standard recording studio, was in this building in Tribeca, on the first floor. There was a cat that kept crawling all over me (cute little bugger--left white hairs all over my black dress. Go figure). The room had five different decades of stuff in it: an '80s-looking mirror on the wall; an old, old Singer sewing machine from the 20s; an old radio; a huge vintage portrait of Elizabeth Taylor on the wall; and this coffee table that looked like it was carved out of a tree. Not to mention paisley Oriental rugs and a wet bar that looked like it was from the '70s. Apparently different shows can rent out the space to record there, and just...zowie. What a space indeed.

So, I am pleased to report that the interview went very well--I even got to read my "Letter to My Younger Self" on the air! If you're interested in listening, here is the link (just click on the "play" button, or click "Download" to download it to your computer): Please do let me know what you think of the show if you decide to listen. Thanks, and I hope you enjoy it!

Tuesday, June 8, 2010

Friends with Benefits

This past Tuesday, I attended the 6th annual benefit for GRASP, the Global and Regional Asperger Syndrome Partnership. Each year, GRASP gives out three awards: the DNA (Divine Neurotypical Award) to a neurotypical individual who has made tremendous contributions and worked towards helping the autism/Asperger's community, the FAB (Friend and Benefactor award) to an organization that has funded and worked towards improving the lives of individuals on the spectrum, and, most recently, the DSM (Distinguished Spectrumite Medal) to a person who is on the spectrum themselves, for their contributions to the Asperger's community.

This year's honorees were Lois Rosenwald (DNA), Linda Walder-Fiddle (FAB), and John Elder Robison (DSM). I was especially thrilled to hear about Linda, as I am on the Self-Advocate Advisory Board for her organization, the Daniel Jordan Fiddle Foundation. Having met John at the AHA-NY conference last month, I was also happy to hear about him getting the DSM, as he is a very nice, very funny man and has done quite a lot to raise the profile of Asperger's Syndrome in the media.

Every year, Michael John Carley (Executive Director of GRASP) has a young adult diagnosed with Asperger's stand up and speak for a few minutes before the awards are given out, to say what GRASP has meant to them over the years. As excited as I was to attend the benefit in the first place, my spirits soared when Michael asked me to be the one to speak this year. I remembered sitting in the audience last year and wishing that it was I who was up there speaking. Stranger things, eh?

It is a bit daunting, however, to condense all that I could say into a 5-minute speech. I had jotted down a few notes on a purple index card, just to remind myself of the points I wanted to touch on, but once I got up there, I hardly even looked at it. The words just seemed to flow, and I spoke from my heart. I don't know if anyone was video recording it, but I feel pretty good about what I said and I believe I got my message across articulately and with poise (which is rare for me, because my spazitude has always gotten in the way of even the tiniest scrap of poise that I might have had in the past).

Just when I thought the evening couldn't get any did! Malachy McCourt (brother of author Frank, who wrote Angela's Ashes, and who is an author, playwright, and political activist in his own right) was in attendance as the resident "celebrity auctioneer" who hosted the silent auction that was taking place. He got up at the end to announce the winners of the auctions, but before he did, he quoted a part of my speech! I had at one point compared being a person with Asperger's Syndrome in a roomful of neurotypicals to Lawrence Welk being at the Apollo Theater.

"Lawrence Welk at the Apollo...that image will stay with me forever!" Malachy declared, and I laughed, elated beyond all measure that he had both quoted me AND liked the joke that I made! I just couldn't believe it. I went up to him afterwards and thanked him for giving me a shout-out, and he was just so sweet, saying that he had loved my speech and the way I'd spoken. He's like an old Irish grandpa, and he tells wonderfully bawdy jokes and has a razor-sharp wit. I even gave him a big hug, and he hugged me back.

My parents were at the benefit, too, and I was able to introduce them to Marc Sirkin from Autism Speaks, the man who had asked to publish my "Letter to My Younger Self" on Autism Speaks' blog. He had brought with him another gentleman named Kai MacMahon, who is the new Director of Online Fundraising at Autism Speaks. Kai introduced himself to me (I liked him right off the bat because he's English. The accent does it for me, what can I say), and we had a lovely little conversation about cooking and my ability and his lack thereof. He said he'd read my Letter as well and had really enjoyed it.

I also met Jesse Saperstein, who just published a book called "Atypical: Life with Asperger's in 20 1/3 Chapters." Interestingly, Jesse is the person who played the same role at the benefit last year that I played this year. I am hoping that, with any small measure of luck, I will follow in his footsteps and have published "The Naughty Autie" by this time next year. In fact, Jesse told me that he was going to refer his publisher to me, because they are looking to publish books about Asperger's Syndrome. So, fingers and toes crossed! We'll see what happens.

I have to admit, I was a little nervous about my speech, if only because I wanted to be sure I covered all of the ground that needed to be covered, and that I did it well. People were coming up to me afterwards to offer all sorts of praise, and so it seems my speech went over like gangbusters! Everyone was so kind and friendly, and it greatly put my mind at ease, that's for sure.

So, overall, the 6th annual GRASP benefit was a smashing success. My friend/business manager Nicole had donated three necklaces to the silent auction, and at least one was bid on (I'm sure all of them were, though). I got to see lots of old, familiar faces, and a few new ones of people who'd heard of me and even read my blog! So here's a big *wave* to all of you out there. Thank you for coming up to me and letting me know who you are! I hope to meet all of the readers of my blog someday, because your support has meant so much to me as I continue on this journey to making the voices heard of all those who are on the autism spectrum. Today, the GRASP benefit in NYC; tomorrow--the world. :)

And now, for a few pictures from the evening!

Linda Walder-Fiddle and me

Marc Sirkin, Chief Community Officer of Autism Speaks, and me

My mom and me speaking to author Jesse Saperstein at his book-signing table.

Me speaking at the benefit. You can't tell here, but Malachy McCourt was in the row right behind where my parents and I were sitting!