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: http://www.facebook.com/note.php?note_id=401225237905) and forward this to anyone you think might be interested. Thank you!
CALL FOR PARTICIPANTS!
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 AGrav3230@aol.com. 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.
Wednesday, June 16, 2010
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, either...it 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): http://nytalkradio.net/wordpress/podcasts/your-beautiful-child/lucky-13/. Please do let me know what you think of the show if you decide to listen. Thanks, and I hope you enjoy it!
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, either...it 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): http://nytalkradio.net/wordpress/podcasts/your-beautiful-child/lucky-13/. 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 better...it 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!
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 better...it 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!
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!
Thursday, May 13, 2010
Everything in Moderation
So, here we are now on the 13th of May, and I have some wonderful new things to write about!
First of all, on May 1st, I had a first of my own: my first time acting as a moderator for a panel at a conference. AHA-NY (AHANY.org) is a support organization on Long Island for individuals with high-functioning autism and Asperger's Syndrome. My mom happens to be on the board of this organization, and I've known the president, Pat Schissel, for a great many years. I got my start in public speaking at AHA-NY's Spring conference ages ago, as a member of the teen panel when I was 14.
That was when the conference was still held at Roslyn High School, but now it's become bigger and better than ever, and for the past several years, has been held at Adelphi University in Garden City, NY. This year promised to be extra special, as the keynote speaker was John Elder Robison, author of Look Me in the Eye. As it turned out, John was also one of the speakers on the adult panel...the very panel that I was asked to moderate.
The topic of the panel was adults who had received their autism diagnoses in adulthood (in their 20s, 30s, 40s, and beyond) and how it affected their relationships with others and their lives overall. Aside from John, the other panelists were Ryan Oldis, Zosia Zaks, and Branden Plank. I remember standing, waiting, as Pat introduced me to the crowd. I actually spoke on another adult panel at that conference five years ago, with Stephen Shore and another person, and it was also the last AHA Spring conference that I attended. How different...how fitting, to be returning in this new role.
I think I did a fairly decent job, despite not having the effortless smoothness that seasoned moderators possess. I was able to meet John Robison before the panel, and after at the post-conference gathering at Pat's house, which was quite nice. And, funnily enough, I will be seeing him again at GRASP's annual benefit on June 8th in NYC, where he is receiving the DSM (Distinguished Spectrumite Medal) award, and where Michael John Carley has asked me to speak for a few moments about what GRASP has meant to me.
In other news, on April 29th, I defended my Masters thesis for a second time. I spent months revising and reworking my proposal, with the help of my advisor, Ken Reeve, and together we made my study a thing of beauty to behold. I hardly felt nervous at all as I prepared for my defense--and those preparations included making food for the big day to bring to my committee: Quinoa pilaf with spring vegetables (asparagus, orange bell pepper, red bell pepper, zucchini, golden beets); mini-grilled cheese sandwiches with fontina, Parmesan, sage, and prosciutto; and a blueberry cornmeal cake for dessert.
The defense went so smoothly--far more than the first one had back in December. And I am pleased as punch to report that my proposal was accepted with minor revisions! So that means I just have to make a few small changes, and I can then start running my study. I've met with my professor and gone over the changes that need to be made, and if all goes according to schedule and I obtain my participants without too much trouble, I should be up and running by the beginning of June.
The last bit of news that I have to share is that this weekend coming up is very special, because it's my graduation. Sunday is the commencement ceremony, and I'll be decked out in my cap and gown, walking up that aisle and on stage to receive my diploma (holder). I feel like a bit of a phony because I'm not actually going to get my diploma until August (since I'm not finished with my study yet). But the event itself is still important, and I just can't believe it's finally here.
I'm going to get pictures with my professors and my family (my mom, dad, godmother/aunt, and godfather/uncle will be in attendance), and will put them up here on the blog once I have them, so keep your eyes on this space. :)
First of all, on May 1st, I had a first of my own: my first time acting as a moderator for a panel at a conference. AHA-NY (AHANY.org) is a support organization on Long Island for individuals with high-functioning autism and Asperger's Syndrome. My mom happens to be on the board of this organization, and I've known the president, Pat Schissel, for a great many years. I got my start in public speaking at AHA-NY's Spring conference ages ago, as a member of the teen panel when I was 14.
That was when the conference was still held at Roslyn High School, but now it's become bigger and better than ever, and for the past several years, has been held at Adelphi University in Garden City, NY. This year promised to be extra special, as the keynote speaker was John Elder Robison, author of Look Me in the Eye. As it turned out, John was also one of the speakers on the adult panel...the very panel that I was asked to moderate.
The topic of the panel was adults who had received their autism diagnoses in adulthood (in their 20s, 30s, 40s, and beyond) and how it affected their relationships with others and their lives overall. Aside from John, the other panelists were Ryan Oldis, Zosia Zaks, and Branden Plank. I remember standing, waiting, as Pat introduced me to the crowd. I actually spoke on another adult panel at that conference five years ago, with Stephen Shore and another person, and it was also the last AHA Spring conference that I attended. How different...how fitting, to be returning in this new role.
I think I did a fairly decent job, despite not having the effortless smoothness that seasoned moderators possess. I was able to meet John Robison before the panel, and after at the post-conference gathering at Pat's house, which was quite nice. And, funnily enough, I will be seeing him again at GRASP's annual benefit on June 8th in NYC, where he is receiving the DSM (Distinguished Spectrumite Medal) award, and where Michael John Carley has asked me to speak for a few moments about what GRASP has meant to me.
In other news, on April 29th, I defended my Masters thesis for a second time. I spent months revising and reworking my proposal, with the help of my advisor, Ken Reeve, and together we made my study a thing of beauty to behold. I hardly felt nervous at all as I prepared for my defense--and those preparations included making food for the big day to bring to my committee: Quinoa pilaf with spring vegetables (asparagus, orange bell pepper, red bell pepper, zucchini, golden beets); mini-grilled cheese sandwiches with fontina, Parmesan, sage, and prosciutto; and a blueberry cornmeal cake for dessert.
The defense went so smoothly--far more than the first one had back in December. And I am pleased as punch to report that my proposal was accepted with minor revisions! So that means I just have to make a few small changes, and I can then start running my study. I've met with my professor and gone over the changes that need to be made, and if all goes according to schedule and I obtain my participants without too much trouble, I should be up and running by the beginning of June.
The last bit of news that I have to share is that this weekend coming up is very special, because it's my graduation. Sunday is the commencement ceremony, and I'll be decked out in my cap and gown, walking up that aisle and on stage to receive my diploma (holder). I feel like a bit of a phony because I'm not actually going to get my diploma until August (since I'm not finished with my study yet). But the event itself is still important, and I just can't believe it's finally here.
I'm going to get pictures with my professors and my family (my mom, dad, godmother/aunt, and godfather/uncle will be in attendance), and will put them up here on the blog once I have them, so keep your eyes on this space. :)
Sunday, May 9, 2010
Thoughts on Mother's Day
Mother's Day is the day we celebrate mothers. We also celebrate foster mothers, grandmothers, aunts...those who are with us now and who have come before us to play that unique, unalterable role in our lives. I was at my parents' house on Long Island yesterday. My mom's cousin Lenore and her daughter Jen came from New Jersey to celebrate the day with us. We were eating dinner, talking of many different stories of life in years past, moments from my mom and Lenore's youthful days, and memories in which our lives intertwined in different ways.
One particular memory that came up was what happened to my mother when she developed post-partum depression after I was born in 1983. I was five weeks early, as many people know--born March 23rd, instead of the expected April 27th. Everything was chaotic in those early days, though blissful; my mom nursed me without issue from March right on through to the summer.
It was in July that things changed.
I sat listening as my father described what it was like--how she would stand in the doorway of our old house on Jamaica Avenue, standing as if waiting for a trolley car to come by. She'd begun to slip before then, and so my dad had ferried baby me off to New Jersey, where my Sitto and other grandparents took care of me. He watched her crumbling, the very threads of her sanity coming unloosed, day by day. Hallucinations. Thinking she had the answers to the world's problems...while my dad sat helpless, unable to find the answers to hers.
She was hospitalized in the psych ward at Mather Hospital for a brief period, but was able to convince her doctor to have her released. But still, my dad couldn't handle her, and as the months went on, she drifted farther away. He went to bring her back to Mather in November, on the eve of Thanksgiving, only to find out that their 11-bed ward had no room for her--they'd given her bed away.
The next nearest facility was in Smithtown, and the only vehicle able to take my mom was a police car. It was late at night, and my dad drove as fast as he could in his then-car, a Volkswagen Rabbit, trying to keep up with the cruiser.
My mom stayed there until January, and every day, after he got finished teaching, my dad would go to visit her. He'd buy her egg creams in the hospital cafeteria (her favorite), and would stay with her for the two hours that visitors were allotted. He described how, when he would leave, the door of the ward would coldly lock shut behind him. I could tell how painful it was for him not only to visit, but to leave her there.
The doctors tried several different medications to help my mother, but none worked. This left only one other course of treatment: electroshock therapy. She had eight treatments in all; it was finally after the fourth that my father said he saw a change in her--saw the light begin to return to her eyes as she slowly grew lucid. The hallucinations stopped, and she became something like her old self again.
Eight electroshock treatments. That's what it took to restore the chemical imbalance in my mother's brain, to bring her back from this dark place that she'd been living in. She was prescribed lithium and seen under a doctor's care for a year following her release from this facility. My dad was able to bring me back to Long Island, and there, my mother learned to take care of me, for a second time.
My father is not what you'd call an emotional man. As I sat at the dining room table, my knees pulled up tight to my chest, I could see the pain in him rising to the surface. The slight watering of his eyes as he recalled the details so vividly. I felt a tightness in my own chest, an overwhelming sadness that my mother and he ever had to go through that. I know, without question, that it was one of the most difficult periods of both their lives.
Even though I know I have no reason to, some small part of me feels responsible for what happened to her. I was just a baby at the time, but it was carrying me that caused the chemistry of her body to change. And it left her sick...sick to where I'm sure my dad must've wondered if she would ever truly be well again.
I was a lousy person when I was a teenager, but, most teenagers are. I know I wasn't as grateful for her as I should have been, and now, especially after hearing my dad recount that story today, I don't know if I'll ever be grateful enough. I've heard it said that mothers do so much for their kids--they help them, love them, discipline them...and sometimes suffer for them. But I never wanted my mom to suffer for me.
Two weekends ago, she and I went to visit a former teacher of mine from high school, Ms. Llorens. I had her for Latin in 7th grade, and her son was in the same grade as I, and only one of a few classmates of mine who ever treated me decently. She was diagnosed with breast cancer not long ago, and has undergone chemotherapy, and, after taking the month of May off, will have to undergo radiation treatment throughout June.
Although my mom has visited her several times (always on Sundays), I hadn't had a chance to see her since finding out about the cancer. I didn't know what to expect when we went over to her house, and then the door opened...and she was still her. She had a knitted cap on, and her eyebrows were nearly all gone as a result of the chemo. But when she smiled, it was the same wide smile I'd always remembered, pushing her cheeks up and rounded as it spread across her face.
We sat on some couches in a room next to the kitchen, drinking tea, and she and my mom ate pieces of the blueberry cornmeal cake I'd brought that was leftover from my thesis defense. The topic of conversation varied widely, and at one point, one of her other sons called the house. She briefly spoke a bit of Spanish to him on the phone, and the sound of her speaking it was like music. I remember how, when I was in high school, she'd stand outside her classroom greeting incoming students with a melodious, "¡Hola!" and that big smile.
The greatest connection Ms. Llorens and I share, however, is that we have the same birthday. I sometimes joke about how everyone and their brother seems to be born on March 23rd these days, but I never minded sharing a birthday with her. Somehow, it made it more special, and I would always walk into the Foreign Language Office and say, "Happy Birthday, birthday buddy!" and she'd smile right back at me and wish me a happy birthday.
So as I sat there, cup of tea in hand, listening to her talk about the cancer...the sheer awfulness of being told that you have it, and the strength that she hasn't had because of it, and how long it took her just to be able to leave the house, I could feel the tears springing up at the corners of my eyes. I told her that if I could, I would take all of the pain she experienced/is experiencing and would feel it for her, so she wouldn't have to. And I meant it.
I later told my mom the same thing, that if she ever got sick in some way, I would want to do that for her. She just chuckled softly in her mom way and said, "Thank you, sweetie." But she was sick, once upon a time, and I cannot imagine what Ms. Llorens is going through, or what my mom and dad went through all those years ago.
The only thing I know is that I would give up the entire world if I could take away all of the fear and anxiety and anguish that they felt. Because I know moms are supposed to be the givers, the sacrificers, the do-it-alls...that's what we celebrate on Mother's Day. The seeming infallibility and invincibility of these wonderful women who have shaped our lives so profoundly. To know of Ms. Llorens' and my mother's vulnerability is frightening, in part because I know I'm no longer the little girl who thinks grownups are strong and perfect. But it's also scary because I can't do a damn thing about either situation.
Well, maybe that's not so true. I know that one thing I can do is to hold both of these women close in my heart, as I always have. And whatever guilt I may feel over my mother's sickness or grief over Ms. Llorens', I still want what I've always wanted: for them to be proud of me. So all I can do is honor them, by being the type of women they are. The givers. The sacrificers. Mothers who do everything and ask for nothing, but deserve so much. Hopefully, someday...I'll be able to give it to them.
Me, around age 3, with my mom.
One particular memory that came up was what happened to my mother when she developed post-partum depression after I was born in 1983. I was five weeks early, as many people know--born March 23rd, instead of the expected April 27th. Everything was chaotic in those early days, though blissful; my mom nursed me without issue from March right on through to the summer.
It was in July that things changed.
I sat listening as my father described what it was like--how she would stand in the doorway of our old house on Jamaica Avenue, standing as if waiting for a trolley car to come by. She'd begun to slip before then, and so my dad had ferried baby me off to New Jersey, where my Sitto and other grandparents took care of me. He watched her crumbling, the very threads of her sanity coming unloosed, day by day. Hallucinations. Thinking she had the answers to the world's problems...while my dad sat helpless, unable to find the answers to hers.
She was hospitalized in the psych ward at Mather Hospital for a brief period, but was able to convince her doctor to have her released. But still, my dad couldn't handle her, and as the months went on, she drifted farther away. He went to bring her back to Mather in November, on the eve of Thanksgiving, only to find out that their 11-bed ward had no room for her--they'd given her bed away.
The next nearest facility was in Smithtown, and the only vehicle able to take my mom was a police car. It was late at night, and my dad drove as fast as he could in his then-car, a Volkswagen Rabbit, trying to keep up with the cruiser.
My mom stayed there until January, and every day, after he got finished teaching, my dad would go to visit her. He'd buy her egg creams in the hospital cafeteria (her favorite), and would stay with her for the two hours that visitors were allotted. He described how, when he would leave, the door of the ward would coldly lock shut behind him. I could tell how painful it was for him not only to visit, but to leave her there.
The doctors tried several different medications to help my mother, but none worked. This left only one other course of treatment: electroshock therapy. She had eight treatments in all; it was finally after the fourth that my father said he saw a change in her--saw the light begin to return to her eyes as she slowly grew lucid. The hallucinations stopped, and she became something like her old self again.
Eight electroshock treatments. That's what it took to restore the chemical imbalance in my mother's brain, to bring her back from this dark place that she'd been living in. She was prescribed lithium and seen under a doctor's care for a year following her release from this facility. My dad was able to bring me back to Long Island, and there, my mother learned to take care of me, for a second time.
My father is not what you'd call an emotional man. As I sat at the dining room table, my knees pulled up tight to my chest, I could see the pain in him rising to the surface. The slight watering of his eyes as he recalled the details so vividly. I felt a tightness in my own chest, an overwhelming sadness that my mother and he ever had to go through that. I know, without question, that it was one of the most difficult periods of both their lives.
Even though I know I have no reason to, some small part of me feels responsible for what happened to her. I was just a baby at the time, but it was carrying me that caused the chemistry of her body to change. And it left her sick...sick to where I'm sure my dad must've wondered if she would ever truly be well again.
I was a lousy person when I was a teenager, but, most teenagers are. I know I wasn't as grateful for her as I should have been, and now, especially after hearing my dad recount that story today, I don't know if I'll ever be grateful enough. I've heard it said that mothers do so much for their kids--they help them, love them, discipline them...and sometimes suffer for them. But I never wanted my mom to suffer for me.
Two weekends ago, she and I went to visit a former teacher of mine from high school, Ms. Llorens. I had her for Latin in 7th grade, and her son was in the same grade as I, and only one of a few classmates of mine who ever treated me decently. She was diagnosed with breast cancer not long ago, and has undergone chemotherapy, and, after taking the month of May off, will have to undergo radiation treatment throughout June.
Although my mom has visited her several times (always on Sundays), I hadn't had a chance to see her since finding out about the cancer. I didn't know what to expect when we went over to her house, and then the door opened...and she was still her. She had a knitted cap on, and her eyebrows were nearly all gone as a result of the chemo. But when she smiled, it was the same wide smile I'd always remembered, pushing her cheeks up and rounded as it spread across her face.
We sat on some couches in a room next to the kitchen, drinking tea, and she and my mom ate pieces of the blueberry cornmeal cake I'd brought that was leftover from my thesis defense. The topic of conversation varied widely, and at one point, one of her other sons called the house. She briefly spoke a bit of Spanish to him on the phone, and the sound of her speaking it was like music. I remember how, when I was in high school, she'd stand outside her classroom greeting incoming students with a melodious, "¡Hola!" and that big smile.
The greatest connection Ms. Llorens and I share, however, is that we have the same birthday. I sometimes joke about how everyone and their brother seems to be born on March 23rd these days, but I never minded sharing a birthday with her. Somehow, it made it more special, and I would always walk into the Foreign Language Office and say, "Happy Birthday, birthday buddy!" and she'd smile right back at me and wish me a happy birthday.
So as I sat there, cup of tea in hand, listening to her talk about the cancer...the sheer awfulness of being told that you have it, and the strength that she hasn't had because of it, and how long it took her just to be able to leave the house, I could feel the tears springing up at the corners of my eyes. I told her that if I could, I would take all of the pain she experienced/is experiencing and would feel it for her, so she wouldn't have to. And I meant it.
I later told my mom the same thing, that if she ever got sick in some way, I would want to do that for her. She just chuckled softly in her mom way and said, "Thank you, sweetie." But she was sick, once upon a time, and I cannot imagine what Ms. Llorens is going through, or what my mom and dad went through all those years ago.
The only thing I know is that I would give up the entire world if I could take away all of the fear and anxiety and anguish that they felt. Because I know moms are supposed to be the givers, the sacrificers, the do-it-alls...that's what we celebrate on Mother's Day. The seeming infallibility and invincibility of these wonderful women who have shaped our lives so profoundly. To know of Ms. Llorens' and my mother's vulnerability is frightening, in part because I know I'm no longer the little girl who thinks grownups are strong and perfect. But it's also scary because I can't do a damn thing about either situation.
Well, maybe that's not so true. I know that one thing I can do is to hold both of these women close in my heart, as I always have. And whatever guilt I may feel over my mother's sickness or grief over Ms. Llorens', I still want what I've always wanted: for them to be proud of me. So all I can do is honor them, by being the type of women they are. The givers. The sacrificers. Mothers who do everything and ask for nothing, but deserve so much. Hopefully, someday...I'll be able to give it to them.
Me, around age 3, with my mom.
Monday, April 19, 2010
Exciting News
I have something wonderful to share with you all, though I'm beginning to feel like a bit of a broken record! But it definitely deserves to be mentioned on my blog, so here goes.
As I recounted in a previous entry, back at the end of February, I participated in a Think Tank at Autism Speaks' headquarters in NYC. The purpose of this was to discuss the result of the Community Life section of the AFAA Town Hall meeting that took place in October.
While I was at the headquarters of AS, I briefly met a man named Marc Sirkin, the Chief Community Officer. He e-mailed me shortly thereafter, saying he'd looked at my blog and wanted to post my "Letter To My Younger Self" to Autism Speaks' main blog.
All I could think of was what a great opportunity it would be to really reach and (hopefully) help a wide range of people, so I said yes. After a couple weeks of waiting, it was finally posted up on Thursday. You can see it here: http://blog.autismspeaks.org/2010/04/15/itow-gravino/
A link was also posted on Autism Speaks' Facebook page, here: http://www.facebook.com/autismspeaks?ref=ts#!/posted.php?id=75219157496&share_id=118852414795530&comments=1#s118852414795530.
The response has been absolutely unbelievable. As of now, I've received 47 comments on it, and it's received over 200 "likes" on the Facebook page and there are 69 comments so far there. The comments have been incredible, more than anything I ever would have expected. I was moved to tears by some of the things people said, and I'm so grateful that I did take this opportunity.
I also found out yesterday that my post made Wordpress.com's list of Top Posts for April 17, 2010, coming in at #55: http://botd.wordpress.com/2010/04/17/top-posts-1448/.
It's becoming more apparent to me that there are two stages to this whole thing: the initial impact of when the blog was first posted, and now this rippling effect that seems to be taking place. Who knows what else may occur in the coming days, weeks, even months? I'm excited (and a little bit nervous) to find out.
To my new followers here on my blog and all of you who've come here by way of Autism Speaks: Welcome! I'm so happy to have you. I would just like to restate that I do make public speaking appearances at conferences, support group meetings, professional development workshops, school assemblies, and more, so if you are interested in having me speak to your group and read my "Letter to My Younger Self," please feel free to contact me via e-mail, or contact my business manager, Nicole Turon-Diaz, at learningbydesign@verizon.net. Thank you!
As I recounted in a previous entry, back at the end of February, I participated in a Think Tank at Autism Speaks' headquarters in NYC. The purpose of this was to discuss the result of the Community Life section of the AFAA Town Hall meeting that took place in October.
While I was at the headquarters of AS, I briefly met a man named Marc Sirkin, the Chief Community Officer. He e-mailed me shortly thereafter, saying he'd looked at my blog and wanted to post my "Letter To My Younger Self" to Autism Speaks' main blog.
All I could think of was what a great opportunity it would be to really reach and (hopefully) help a wide range of people, so I said yes. After a couple weeks of waiting, it was finally posted up on Thursday. You can see it here: http://blog.autismspeaks.org/2010/04/15/itow-gravino/
A link was also posted on Autism Speaks' Facebook page, here: http://www.facebook.com/autismspeaks?ref=ts#!/posted.php?id=75219157496&share_id=118852414795530&comments=1#s118852414795530.
The response has been absolutely unbelievable. As of now, I've received 47 comments on it, and it's received over 200 "likes" on the Facebook page and there are 69 comments so far there. The comments have been incredible, more than anything I ever would have expected. I was moved to tears by some of the things people said, and I'm so grateful that I did take this opportunity.
I also found out yesterday that my post made Wordpress.com's list of Top Posts for April 17, 2010, coming in at #55: http://botd.wordpress.com/2010/04/17/top-posts-1448/.
It's becoming more apparent to me that there are two stages to this whole thing: the initial impact of when the blog was first posted, and now this rippling effect that seems to be taking place. Who knows what else may occur in the coming days, weeks, even months? I'm excited (and a little bit nervous) to find out.
To my new followers here on my blog and all of you who've come here by way of Autism Speaks: Welcome! I'm so happy to have you. I would just like to restate that I do make public speaking appearances at conferences, support group meetings, professional development workshops, school assemblies, and more, so if you are interested in having me speak to your group and read my "Letter to My Younger Self," please feel free to contact me via e-mail, or contact my business manager, Nicole Turon-Diaz, at learningbydesign@verizon.net. Thank you!
Tuesday, March 23, 2010
Twenty-seven...
Today is my birthday.
Twenty-seven years have I been on this planet now. It feels like longer. And yet it's going so much faster now than it used to, faster than I have figured out how to handle.
My friend Nicole is coming over tonight. We were supposed to go out for dinner, but plans have changed slightly and now I'm going to be cooking dinner here. That makes me really happy, actually, because I love to cook. I'll be making chicken cutlets with asparagus, capers, and shallots. And for dessert, a blood orange polenta upside-down cake with whipped crème fraîche. I like the idea of making my own birthday dinner, as antithetical a concept as it seems to most people (cooking on your birthday? Pshaw!).
Then, I'm having a party this weekend, which will consist of dinner at a restaurant here in Montclair called Raymond's, followed by bowling at Eagle Rock Lanes in West Orange. I miss bowling, quite frankly, and I know how fun it can be, so I thought, what the heck...let's do bowling! I'll just be happy to see my friends and to spend time with them.
For now, though, it is quiet. The skies are grey outside and the temperatures have dropped from the record highs of this past weekend. In truth, I'm glad they did. I prefer the slow increase from cold to warmth, rather than it happening so suddenly. Already, the tree outside my bathroom window has begun to bud. The grass is green from the rains we've had over the last week, and the earth is beginning to awaken again.
It's all about time. Things happening in their own due time, like with nature. Everything that's happened over this past year has brought me to where I am now, and I really feel like there are some great things in store for 2010. I've learned by now not to get my hopes up, so I will simply follow the old adage taught to me by my dad: Hope for the best, expect the worst.
When I went to a Herstory womens' writing group last week, one of the women there asked me how old I was. I told her, and she said, "Wow...you look like you're seventeen," in this sort of awed voice. It's hard to believe that I left 17 behind so long ago. I spent many years trying to run away from it, to run as far as I could from the awfulness of high school and my adolescence. At last, I finally feel like I can stop running, and just continue through life at a casual stroll.
Happy, happy birthday to me...
Twenty-seven years have I been on this planet now. It feels like longer. And yet it's going so much faster now than it used to, faster than I have figured out how to handle.
My friend Nicole is coming over tonight. We were supposed to go out for dinner, but plans have changed slightly and now I'm going to be cooking dinner here. That makes me really happy, actually, because I love to cook. I'll be making chicken cutlets with asparagus, capers, and shallots. And for dessert, a blood orange polenta upside-down cake with whipped crème fraîche. I like the idea of making my own birthday dinner, as antithetical a concept as it seems to most people (cooking on your birthday? Pshaw!).
Then, I'm having a party this weekend, which will consist of dinner at a restaurant here in Montclair called Raymond's, followed by bowling at Eagle Rock Lanes in West Orange. I miss bowling, quite frankly, and I know how fun it can be, so I thought, what the heck...let's do bowling! I'll just be happy to see my friends and to spend time with them.
For now, though, it is quiet. The skies are grey outside and the temperatures have dropped from the record highs of this past weekend. In truth, I'm glad they did. I prefer the slow increase from cold to warmth, rather than it happening so suddenly. Already, the tree outside my bathroom window has begun to bud. The grass is green from the rains we've had over the last week, and the earth is beginning to awaken again.
It's all about time. Things happening in their own due time, like with nature. Everything that's happened over this past year has brought me to where I am now, and I really feel like there are some great things in store for 2010. I've learned by now not to get my hopes up, so I will simply follow the old adage taught to me by my dad: Hope for the best, expect the worst.
When I went to a Herstory womens' writing group last week, one of the women there asked me how old I was. I told her, and she said, "Wow...you look like you're seventeen," in this sort of awed voice. It's hard to believe that I left 17 behind so long ago. I spent many years trying to run away from it, to run as far as I could from the awfulness of high school and my adolescence. At last, I finally feel like I can stop running, and just continue through life at a casual stroll.
Happy, happy birthday to me...
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."
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."
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!
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!
Wednesday, November 4, 2009
Thoughts on My First Workshop Presentation
Last month, from October 9-11, I attended and presented a workshop at Autism New Jersey's annual conference in Atlantic City. I have a lot of thoughts on how the presentation went, and so I thought I'd share them here.
Let me preface this by saying that the presentation would not have happened at all had it not been for Dr. Lynda Geller. ANJ initially rejected my presentation proposal, but I was able to get the Executive Director, Linda Meyer (who was also one of my professors last semester) to reconsider, provided I could bring someone else on board who had a bit more in the way of credentials and expertise. Lynda has both of those in spades, and I am and always will be eternally grateful to her for agreeing to present with me.
Our presentation was titled, "Look Out, Here Comes Tomorrow: Strategies for Transitioning Students with Asperger's Disorder to a College Setting." It's probably fairly obvious, but I am the one who came up with the workshop name, since it has a Monkees song title in it. I'm just glad Lynda had enough of a sense of humor and graciousness to go along with it.
When I submitted the workshop proposal way back in February, I had intended myself to be the sole presenter. When Lynda came on board, I knew things were going to be different, for a number of reasons. I'd never presented a workshop before, for one, and I'd never done any sort of presentation in concert with another professional. It's always been me up until now...the Amy Gravino show, if you will, speaking on panels and doing a few keynotes. A co-presentation was a very new thing for me, and so I did not know what to expect.
It seemed like we did not really collaborate on the presentation at all, at least up until the last week before the conference. Lynda's incredibly busy schedule made it difficult reach her by phone or e-mail, and as the date of the conference grew nearer, my anxiety (understandably) heightened. I knew she would be absolutely good to go no matter what, but, while I've done tons of presentations on my own, this was the first with someone else, and I felt like it would be helpful to me if knew what she had planned and where I came in.
Had I been the sole presenter, I certainly would have designed my own Powerpoint presentation months ago. Lynda, however, having done a presentation of her own at countless conferences, brought a Powerpoint with her, so that was helpful in solving that issue, as I didn't have to worry about creating my own. The only problem was that I felt a bit out of place because it was she who presented for the bulk of the workshop. My contribution ended up being around 20 to 25 minutes' worth of personal anecdotes, as a means of supplementing the Powerpoint. I didn't mind doing this, although all I had to work from were a few notes hastily scribbled onto a wrinkled piece of paper, but it just wasn't exactly what I'd dreamed of when I thought of what my first workshop would be like.
Another issue is that we only had eight people in attendance at our workshop. Two were my parents, and another was my thesis chair. I know he could have gone to any other workshop, but he was kind enough to come to mine, and it meant a lot to me. As Lynda and I were setting up, I had asked the Autism New Jersey volunteer how many people signed up. "Fifteen," she said. I was disheartened by this; even more so when only eight showed up.
Part of the reason perhaps why the turnout was so low was that it was the last workshop of the day. Many people become exhausted by then, after a full day of conferencing, and so they just take off. Given that the location of this conference was Atlantic City, people have even more reason to leave early. Still, it bothered me. Almost all of the workshops that I attended at the conference dealt with issues faced by adults on the spectrum...and all of them had low numbers of attendees.
I attended a workshop on Saturday that was somewhat similar to mine, as it was about transitioning students with autism spectrum disorders from high school to college. The man who presented it was named Vincent Varrassi, and he used to work at Fairleigh Dickinson University, but now practices privately. I remembered him because I had e-mailed him some months ago about college coaching for people with Asperger's, and he provided some very thoughtful and helpful advice in his response.
I was, therefore, delighted when I discovered that he'd be presenting a workshop at the conference. He'd brought with him two young men with Asperger's with whom he works as clients. They chimed in periodically with anecdotal stories to supplement Mr. Varrassi's Powerpoint. The number of attendees there was even smaller than in my workshop, but in this case, the intimate group allowed for a great back-and-forth dialogue between all of us. In particular, I found myself chiming in on the issues that the guys were talking about, offering insights based on my own experiences. Strangely enough, I felt more comfortable speaking there than I had felt in my own workshop.
After the workshop ended, I went up to Mr. Varrassi to speak with him, and he remembered who I was from the e-mails. He said that just from listening to me speak there in the audience, that I was a "natural," and he wanted to know if I would like to join him and the guys ("our merry band of travelers" was how he put it, I think) when they go speaking at various conferences. Of course, I agreed. He said he wanted to keep in touch with me, so we exchanged business cards as we continued chatting on the way to the escalators.
To get back to the issue of low attendance at these workshops, I know that right now, parents of children on the autism spectrum are faced with an overwhelming number of problems, which is why conferences like this even exist in the first place. But one day those children won't be children anymore. They will turn 18, and what will happen to them? In terms of services and supports, they will drop right off the proverbial cliff. There is nothing, or almost nothing, out there for adults with autism and Asperger's syndrome.
Yet they do exist. These people are not some fantastic myth spun out of the webs of time--they are very real individuals whose lives have been put on hold because they do not have the tools necessary to be successful in society. Many still live at home with their parents and are support by them--but what happens when these parents die? What will happen to the children on the spectrum when their parents die? As many questions and concerns as there are floating around right now, that should be first and foremost in these people's minds, always knowing that one day, their 5-year-old will be 25, and will need to have a way to survive on their own.
So the lack of attendance at these workshops, while not entirely unexpected, still left me wondering when everyone else is going to wake up and catch sight of the tsunami of adolescents on the spectrum who are heading straight for the shores of adulthood and will surely crash and collapse without the assistance and support that they need.
But finally, perhaps the reason I had so few people attend my workshop is that it's simply a rite of passage. Like how someone who is nominated for an Emmy for the first time never wins. If it is just a one-time thing, then I am not so perturbed by it, and I have faith that the turnout next year will be better. I just hope that I don't become the Susan Lucci of autism conferences. Yikes.
So, even though things didn't go quite how I'd hoped, I'm still glad that I presented at Autism New Jersey's annual conference. I'm now focused on presenting again next year, and what I anticipate presenting is my finished thesis study and the data gleaned therein. I think it will be very interesting and I want to share it with the world because of the social significance of such a study, as no one has ever taught dating skills to adults with Asperger's before using the principles of applied behavior analysis. Look out, here comes tomorrow...
Here also is a video of my presentation from the conference. The first four minutes are the remainder of Lynda's portion of the presentation, and the rest is mine:
Let me preface this by saying that the presentation would not have happened at all had it not been for Dr. Lynda Geller. ANJ initially rejected my presentation proposal, but I was able to get the Executive Director, Linda Meyer (who was also one of my professors last semester) to reconsider, provided I could bring someone else on board who had a bit more in the way of credentials and expertise. Lynda has both of those in spades, and I am and always will be eternally grateful to her for agreeing to present with me.
Our presentation was titled, "Look Out, Here Comes Tomorrow: Strategies for Transitioning Students with Asperger's Disorder to a College Setting." It's probably fairly obvious, but I am the one who came up with the workshop name, since it has a Monkees song title in it. I'm just glad Lynda had enough of a sense of humor and graciousness to go along with it.
When I submitted the workshop proposal way back in February, I had intended myself to be the sole presenter. When Lynda came on board, I knew things were going to be different, for a number of reasons. I'd never presented a workshop before, for one, and I'd never done any sort of presentation in concert with another professional. It's always been me up until now...the Amy Gravino show, if you will, speaking on panels and doing a few keynotes. A co-presentation was a very new thing for me, and so I did not know what to expect.
It seemed like we did not really collaborate on the presentation at all, at least up until the last week before the conference. Lynda's incredibly busy schedule made it difficult reach her by phone or e-mail, and as the date of the conference grew nearer, my anxiety (understandably) heightened. I knew she would be absolutely good to go no matter what, but, while I've done tons of presentations on my own, this was the first with someone else, and I felt like it would be helpful to me if knew what she had planned and where I came in.
Had I been the sole presenter, I certainly would have designed my own Powerpoint presentation months ago. Lynda, however, having done a presentation of her own at countless conferences, brought a Powerpoint with her, so that was helpful in solving that issue, as I didn't have to worry about creating my own. The only problem was that I felt a bit out of place because it was she who presented for the bulk of the workshop. My contribution ended up being around 20 to 25 minutes' worth of personal anecdotes, as a means of supplementing the Powerpoint. I didn't mind doing this, although all I had to work from were a few notes hastily scribbled onto a wrinkled piece of paper, but it just wasn't exactly what I'd dreamed of when I thought of what my first workshop would be like.
Another issue is that we only had eight people in attendance at our workshop. Two were my parents, and another was my thesis chair. I know he could have gone to any other workshop, but he was kind enough to come to mine, and it meant a lot to me. As Lynda and I were setting up, I had asked the Autism New Jersey volunteer how many people signed up. "Fifteen," she said. I was disheartened by this; even more so when only eight showed up.
Part of the reason perhaps why the turnout was so low was that it was the last workshop of the day. Many people become exhausted by then, after a full day of conferencing, and so they just take off. Given that the location of this conference was Atlantic City, people have even more reason to leave early. Still, it bothered me. Almost all of the workshops that I attended at the conference dealt with issues faced by adults on the spectrum...and all of them had low numbers of attendees.
I attended a workshop on Saturday that was somewhat similar to mine, as it was about transitioning students with autism spectrum disorders from high school to college. The man who presented it was named Vincent Varrassi, and he used to work at Fairleigh Dickinson University, but now practices privately. I remembered him because I had e-mailed him some months ago about college coaching for people with Asperger's, and he provided some very thoughtful and helpful advice in his response.
I was, therefore, delighted when I discovered that he'd be presenting a workshop at the conference. He'd brought with him two young men with Asperger's with whom he works as clients. They chimed in periodically with anecdotal stories to supplement Mr. Varrassi's Powerpoint. The number of attendees there was even smaller than in my workshop, but in this case, the intimate group allowed for a great back-and-forth dialogue between all of us. In particular, I found myself chiming in on the issues that the guys were talking about, offering insights based on my own experiences. Strangely enough, I felt more comfortable speaking there than I had felt in my own workshop.
After the workshop ended, I went up to Mr. Varrassi to speak with him, and he remembered who I was from the e-mails. He said that just from listening to me speak there in the audience, that I was a "natural," and he wanted to know if I would like to join him and the guys ("our merry band of travelers" was how he put it, I think) when they go speaking at various conferences. Of course, I agreed. He said he wanted to keep in touch with me, so we exchanged business cards as we continued chatting on the way to the escalators.
To get back to the issue of low attendance at these workshops, I know that right now, parents of children on the autism spectrum are faced with an overwhelming number of problems, which is why conferences like this even exist in the first place. But one day those children won't be children anymore. They will turn 18, and what will happen to them? In terms of services and supports, they will drop right off the proverbial cliff. There is nothing, or almost nothing, out there for adults with autism and Asperger's syndrome.
Yet they do exist. These people are not some fantastic myth spun out of the webs of time--they are very real individuals whose lives have been put on hold because they do not have the tools necessary to be successful in society. Many still live at home with their parents and are support by them--but what happens when these parents die? What will happen to the children on the spectrum when their parents die? As many questions and concerns as there are floating around right now, that should be first and foremost in these people's minds, always knowing that one day, their 5-year-old will be 25, and will need to have a way to survive on their own.
So the lack of attendance at these workshops, while not entirely unexpected, still left me wondering when everyone else is going to wake up and catch sight of the tsunami of adolescents on the spectrum who are heading straight for the shores of adulthood and will surely crash and collapse without the assistance and support that they need.
But finally, perhaps the reason I had so few people attend my workshop is that it's simply a rite of passage. Like how someone who is nominated for an Emmy for the first time never wins. If it is just a one-time thing, then I am not so perturbed by it, and I have faith that the turnout next year will be better. I just hope that I don't become the Susan Lucci of autism conferences. Yikes.
So, even though things didn't go quite how I'd hoped, I'm still glad that I presented at Autism New Jersey's annual conference. I'm now focused on presenting again next year, and what I anticipate presenting is my finished thesis study and the data gleaned therein. I think it will be very interesting and I want to share it with the world because of the social significance of such a study, as no one has ever taught dating skills to adults with Asperger's before using the principles of applied behavior analysis. Look out, here comes tomorrow...
Here also is a video of my presentation from the conference. The first four minutes are the remainder of Lynda's portion of the presentation, and the rest is mine:
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