Tuesday, April 28, 2009 was a day that I both anticipated and dreaded. I knew it was going to be a long day, because I had three speaking gigs scheduled--two at a school district in Bedford, NY, and one later that day in Stamford, CT. In Bedford, I was to speak to two groups of middle schoolers--8th graders in the morning assembly, and 6th graders in the afternoon. Nicole Turon-Diaz (my friend/business manager) and I arrived at the school around 9:20am, and there we met up with Joanne McMahon, with whom Nicole and I had coordinated to arrange the day's events. We all chatted for awhile and became familiar with each other, and then in we went to set up for the assembly. The campus had both the middle and high schools on it, and was quite beautiful indeed--never before have I seen such perfectly landscaped grass. The auditorium facility in the high school, which is where the assemblies took place, was also quite lovely.
First came the 8th graders, at 10:00am. I'd forgotten the utter volume at which 14-year-olds operate, and when they began to file into the auditorium, what started as a slight clamor soon escalated into a dull roar of tympanic cavity-throbbing teenage tones (damn you, Micky Dolenz, for renewing my obsession with alliteration). The school principal quieted them down soon enough, though, and then introduced the middle school's Autism Speaks club, which was the sponsor of my appearance. Now, I have said before that I have multiple issues with the Autism Speaks organization, and I did indeed raise an eyebrow upon hearing the name of the club, but I tried to put my animosity aside and just be grateful that a middle school even has an autism club. Anyway...one of the club members proceeded to introduce Joanne McMahon, who then introduced me.
I was unsure about how things would go. Nervous, even. Middle schoolers are a notoriously challenging audience, as I remember from the days of my own misspent youth, and I feared I would not be able to "reach" them.
I could not have been happier to be so wrong.
They were, without question, the most enthusiastic, open junior high kids I've ever encountered. I never knew that junior high kids like that could exist, and it gave me a faint glimmer of promise for the future. It instilled in me the fevered hope that the next generation won't all be made up of sadistic little miscreants, like the ones with whom I matriculated for ten excruciating years.
In both assemblies, I decided to read the Letter to My Younger Self at the start of my speeches, to "bring them in" to the talk. When I finished reading it, they applauded and cheered. They "woo"ed me! The 8th and 6th graders alike had this reaction, and I was simply stunned, because I've never gotten that sort of response before. And when it came time for the Q&A part at the end, they asked the most insightful, awesome questions. One girl asked me if I forgive the people who made fun of me in school. I was not expecting that kind of a question, but I loved it. I tried my best to answer everything they asked me, and they seemed almost disappointed when one of the teachers called the assembly to an end! Nicole and I talked with Joanne about perhaps using my blog as a vehicle to answer more of their questions. We might even do a podcast, so they'll send me their questions and I will answer them on camera. So we'll see what happens with that.
I told the kids that they could come up to me after the assembly, and several of them did! Particularly in the 6th grade assembly. One girl came up to me and said that she knew what it felt like to be made fun of because she had alopecia in 3rd or 4th grade and her hair had fallen out and the kids teased her because of it. A whole gaggle of girls came up to me, and one said that I was "fabulous," and another said she loved my dress and shoes. Suffice it to say, I now (sort of) know what it feels like to be a boy band member. They were all just so inquisitive and shared their feelings and thoughts with me, and I was amazed. The last time I was among that many junior high schoolers, they didn't give me the time of day and I was as good as invisible...but now, I was someone they respected and felt comfortable talking to. What a difference. I definitely, definitely want to speak at more schools in the future. I can see now how much this sort of thing is needed, and how open the kids are (or can be) to it, and so I've got to keep doing it.
By far, however, the most incredible thing occurred after the first morning assembly, with the eighth graders. Joanne and Peter Faustino, the school psychologist, brought Nicole and me to a conference room in the middle school building for lunch. After we finished eating, the four of us went on a walking tour of the campus. As we traversed through the halls and outside past the buildings, the eighth graders actually waved to me from their classroom windows! When we were in the hallways, they'd call out to me: "Hey, Amy!" / "Great job today, Amy!" / "You did an awesome job, Amy!" / "I really liked your speech!" It was beyond surreal. Maybe eighth grade was just a long time ago and my memory is faulty, but I can't remember us kids paying a lot of attention to assemblies when they were going on, let alone giving them a second thought afterwards. So this was above and beyond anything I could've ever imagined. Joanne also asked me to come back again for more gigs, including speaking to the high school students, and I can't wait to do so.
Later that evening, I had another speaking gig, this one at a meeting sponsored by a parent group called Stamford Education 4 Autism, and based (obviously) in Stamford, Connecticut. Robin Portanova, the woman who'd contacted me and Nicole, had also invited my parents to attend, and asked my mother to say a few words, too. In addition, she'd told us that she planned to treat us to dinner! So, we all met up at a restaurant called The 19th Hole, which was just down the street from the school where the meeting was taking place. I had rigatoni with mild and hot sausages in a marsala sauce. I hadn't been sure whether to order that or the pasta primavera, but as soon as I took one bite, I knew I'd made the right choice. The bread on the table was also delicious and made a terrific accompaniment.
The meeting itself began shortly after 7:00pm. Robin spoke first, and after the school principal said a few words, Robin then introduced my mother. My mom spoke for ten minutes, and then it was my turn. Once again, I read the Letter to my Younger Self, and again, I received a round of applause at its conclusion...but I also noticed that there was nary a dry eye in the house. At the conclusion of my speech, Robin gave me a bouquet of flowers wrapped in purple(!) tissue paper, and she gave flowers to my mom and Nicole as well. We finally departed around 9:30, and I got back to Jersey about an hour and ten minutes later. I was dead exhausted upon returning home (having been up since 6 that morning), but it was well worth it. I had honestly expected to just be tired at the end of the day, but I was so jazzed from the school assemblies that the high those kids' reactions had given me carried me through the rest of the day (which only got better at the parent meeting).
Happily, I brought my videocamera with me, and Nicole videotaped the entire 8th grade assembly (including the Q&A), and the parent group speech (including my mother's portion). Once this week ends and my semester is over (and I actually have the time to fiddle with it), I will try to get those uploaded soon and I'll share them with you all here on my blog.
So keep your peepers peeled for that, and please--if you work in a school district, or know someone who works for a district, or are a parent, strongly consider having me come to speak at your school, either to the faculty and staff or the students (or both!). I don't mean to toot my own horn here, but the reactions I got from students, staff, and parents alike last Tuesday galvanized me in a way that I never have felt before. I believe that I can make a difference, and I want to help in any way possible. And if you're worried about budgets or money, don't fret--my fee is negotiable based on the needs and ability of each organization/district. Our kids and adults with autism and Asperger's syndrome need us now, people. We need better trained paraprofessionals and teachers, and a student body that is aware of the youths with autism among them, because they are being so mainstreamed now.
When I spoke in Edison, NJ on April 23rd, during the Q&A, a woman asked me a question. She said that she has a daughter with autism who is about 7 years old, and that she's tried to talk to her school principal about educating the other kids about autism, because they've already begun to bully her daughter. The principal didn't think that the kids were ready to know--he thought that they were too young and that finding out that this woman's daughter had autism could backfire and make things worse. She asked me if I agreed with what her principal said, and my exact words were, "It's a load of horse pucky." Why? Because if kids are old enough to bully, they're old enough to learn. If they're old enough to recognize that someone is "different," than they're old enough to know why. Plain and simple.
This is why I believe so strongly in speaking at the schools, to the students. They're ready for it. Heck, they're more than ready for it--they need it. And kids know from a mile away if you're trying to b.s. them, which is why I believe the students in Bedford responded so strongly to me--because they knew I was speaking from the heart. So I just hope that more districts will give me a chance to come in and keep doing this, because I know that I have the ability to do great good. Autism doesn't last for just one month; "awareness" is always needed, all year round.
Tuesday, May 5, 2009
Sunday, April 26, 2009
A Letter to My Younger Self
I recently received an e-mail from a reader of my blog, who wanted to know what sort of advice I could give to her 9-year-old daughter, who had recently been diagnosed with Asperger's syndrome. The e-mailer gave a very thoughtful suggestion, which was that I write a blog entry in the form of a letter to my younger self, which could then also serve as advice for current parents of children with AS.
I personally was not diagnosed until age 10, but I remember very clearly the loneliness, confusion, and frustration that come to define my life at that time, and how I had no one to turn to back then, no one who could tell me that it was going to be okay. A simple truth of pre-adolescence and teenagedom is that we never believe adults or anyone who tells us that everything is going to be all right. Not because of a lack of trust or innate cynicism (hey, it takes at least a few years to build up to that), but because it's just impossible to think that anyone could understand what we are going through. Well, I am someone who does know, and there are many things I would want to say to my younger self if I had the chance. I know that I can't save that girl, the younger me of long ago, but perhaps I can help a girl very much like that one right now. So, without further ado, here is my Letter to My Younger Self.
"Dear Amy,
I know you're feeling pretty bad right now. The other kids make fun of you a lot, and you don't know why. You're trying really hard to be friends with them--doing all of the things you think they want you to do, and it's just not working. But there is one thing you should know: It's not your fault. Other people might say that, and you won't be able to listen to them; but I am hoping that you will if it's coming from me. It's not your fault. Say it over and over in your head when you feel the worst, because that's when you'll need it most.
It's not your fault. How can it not be your fault? you'll say to yourself as the next few years go by. Everyone else can do this, can make friends, and be normal. Why can't you? That's just one of the many questions I know you have, questions you don't know how or are afraid to ask. They make you feel overwhelmed, like sitting in Mrs. St. Pierre's classroom every day, fidgeting nervously in your seat. You always get up during class to sharpen your pencil, and I know it's because you enjoy the smell when they're freshly-sharpened--it calms you down. So don't feel bad if the other kids snicker or laugh when you smell your pencil. They just don't understand.
You care a lot about what the other kids think of you. I know you hate going to Pool every week because you have to change in the locker room, and the girls make fun of your feet. This will cause you not to feel comfortable wearing flip-flops for many years, and you won't be okay with wearing them again until you're much older. It'll be like that with a lot of things people say to you in school--their exact words will fade from memory, but the effects they have on you will last a long time. But don't worry--one day you're going to make friends with someone who really loves your feet. He'll call your little toe, the one that didn't grow in right, your "Lucky Toe."
That's something you feel like you could use a lot of right now--luck. You keep hoping things will get better, but they never do. I have some good news, though; you won't lose that hope. No matter what happens, you'll still be optimistic--foolishly, maybe, but when you're older, people will tell you how wonderful it is that you are that way.
I have to be honest with you, however; things are going to get a lot worse before they get better. You'll be in junior high school soon, and you don't know it, but 7th and 8th grades will be two of the worst years of your life. Once again: it's not your fault. You like to look at things outside the window--the trees and blue sky make you feel calm. One day you will be in study hall, and you'll go right up to the window and stick your head out of it. That's when someone will tell you to jump. Other voices will join in, and even after the teacher finally tells everyone to be quiet and calms things down, you'll hear them in your head for a long time to come. Every day, someone will make you feel less. Not human. Unwanted. And you'll keep your head down and take it, because no one's going to tell you anything different.
But I will. You're not less, Amy. You're more. More because you have to work twice as hard as everyone else to make your voice heard. You don't know how to fight right now, except for when you lash out after not being able to take it anymore, and then it's you who gets into trouble, rather than your tormentors. They know how not to be seen, to avoid detection. You don't. Even as an adult, you won't quite fully master the art of subtlety, but right now, you're bared to the world. Completely vulnerable. And your classmates are taking full advantage of that fact. They know how to hurt you in the worst ways, so they can get their jollies from your reactions. And because you can't understand what they're doing, you just play straight into their hands, every time. Once more: It's not your fault.
These days, your classmates call you names--ugly, freak, psycho, loser. They call you these things because they don't know you, don't care to and/or don't want to. You're trying so hard to force yourself into their world, with little to no success. But you will have friends one day, Amy. Better still, you won't have to fight for their friendship--they will come to you. I know how unbelievable that seems, especially since you feel like no one wants to be around you at all, not even your parents. But you are loved, even if you don't realize it. You just have to learn how to love yourself.
There are some things that you are good at, Amy. Like writing. You just started writing some poems, and were happy when you saw them published in the local paper (your mom and dad sent them in for you). I have three words of advice for you: Keep doing it. Right now, you write because it's an escape from the world around you, and you don't care about being "good" at it. You'll get a bit of a competitive streak in 8th grade (when you'll come in second place in the Charles Dickens poetry contest, and will be angry at yourself for not winning), but writing will become an important part of your life after that. In fact, one day you won't just be writing for yourself--you'll be writing to help other people. And your writing will help people, even when you don't realize it. So you've got to keep at it.
It's hard to think that you're good at anything when people are constantly telling you that everything you do and are is wrong. In middle and high school, your fellow classmates will tell you to your face to kill yourself, and that no one wants you around, or would care if you were gone. Don't listen to them. I know it's difficult, and their words will go right into you, but they aren't worth it. You are a good person, a person worth having around, and you'd make so many people sad if you were gone. The world is going to need you when you grow up, Amy, so you have to get there. You have to make it through these dark days, because you're going to make a difference in the future. Someday, people will want to hear what you have to say, and you won't believe it, at first. But it will be meaningful, and wonderful. You're going to have to take a lot of crap and go through a lot of pain to get there, but I promise you, it will be worth it.
My time with you is now growing short, young Amy. I hope that some of the things I've said have brought you comfort, or at least given you assurance that there is, indeed, light at the end of this tunnel. In short: things will get better. Lots of people will say that to you, and you'll think that they're crazy or just trying to make you feel better, but it's really, honestly, true. You're an incredibly special, talented girl, and right now you're toiling in obscurity (as so many great artists do), but someday the world is going to see how amazing you are, and all you'll think is, "Where were you people when I was younger?" The future seems far away, almost impossible to think about, but don't be afraid to think about it. You're not even sure if you're going to have one, but you will. You will. And I will end this by saying three words that you don't hear very often (even when your mother says them to you), three words that you'll be desperate to hear when you get older (especially from an aesthetically gifted member of the opposite sex), but that seem very off in the distance right now: I love you. I love you, my younger, high-strung, spastic, uniquely wonderful self. And I'll be here waiting for you. See you in fifteen years!
Love and Many, Many Hugs (which you'll get a lot of when you meet a guy named Dan--trust me on this),
Your 26-year-old Self."
I personally was not diagnosed until age 10, but I remember very clearly the loneliness, confusion, and frustration that come to define my life at that time, and how I had no one to turn to back then, no one who could tell me that it was going to be okay. A simple truth of pre-adolescence and teenagedom is that we never believe adults or anyone who tells us that everything is going to be all right. Not because of a lack of trust or innate cynicism (hey, it takes at least a few years to build up to that), but because it's just impossible to think that anyone could understand what we are going through. Well, I am someone who does know, and there are many things I would want to say to my younger self if I had the chance. I know that I can't save that girl, the younger me of long ago, but perhaps I can help a girl very much like that one right now. So, without further ado, here is my Letter to My Younger Self.
"Dear Amy,
I know you're feeling pretty bad right now. The other kids make fun of you a lot, and you don't know why. You're trying really hard to be friends with them--doing all of the things you think they want you to do, and it's just not working. But there is one thing you should know: It's not your fault. Other people might say that, and you won't be able to listen to them; but I am hoping that you will if it's coming from me. It's not your fault. Say it over and over in your head when you feel the worst, because that's when you'll need it most.
It's not your fault. How can it not be your fault? you'll say to yourself as the next few years go by. Everyone else can do this, can make friends, and be normal. Why can't you? That's just one of the many questions I know you have, questions you don't know how or are afraid to ask. They make you feel overwhelmed, like sitting in Mrs. St. Pierre's classroom every day, fidgeting nervously in your seat. You always get up during class to sharpen your pencil, and I know it's because you enjoy the smell when they're freshly-sharpened--it calms you down. So don't feel bad if the other kids snicker or laugh when you smell your pencil. They just don't understand.
You care a lot about what the other kids think of you. I know you hate going to Pool every week because you have to change in the locker room, and the girls make fun of your feet. This will cause you not to feel comfortable wearing flip-flops for many years, and you won't be okay with wearing them again until you're much older. It'll be like that with a lot of things people say to you in school--their exact words will fade from memory, but the effects they have on you will last a long time. But don't worry--one day you're going to make friends with someone who really loves your feet. He'll call your little toe, the one that didn't grow in right, your "Lucky Toe."
That's something you feel like you could use a lot of right now--luck. You keep hoping things will get better, but they never do. I have some good news, though; you won't lose that hope. No matter what happens, you'll still be optimistic--foolishly, maybe, but when you're older, people will tell you how wonderful it is that you are that way.
I have to be honest with you, however; things are going to get a lot worse before they get better. You'll be in junior high school soon, and you don't know it, but 7th and 8th grades will be two of the worst years of your life. Once again: it's not your fault. You like to look at things outside the window--the trees and blue sky make you feel calm. One day you will be in study hall, and you'll go right up to the window and stick your head out of it. That's when someone will tell you to jump. Other voices will join in, and even after the teacher finally tells everyone to be quiet and calms things down, you'll hear them in your head for a long time to come. Every day, someone will make you feel less. Not human. Unwanted. And you'll keep your head down and take it, because no one's going to tell you anything different.
But I will. You're not less, Amy. You're more. More because you have to work twice as hard as everyone else to make your voice heard. You don't know how to fight right now, except for when you lash out after not being able to take it anymore, and then it's you who gets into trouble, rather than your tormentors. They know how not to be seen, to avoid detection. You don't. Even as an adult, you won't quite fully master the art of subtlety, but right now, you're bared to the world. Completely vulnerable. And your classmates are taking full advantage of that fact. They know how to hurt you in the worst ways, so they can get their jollies from your reactions. And because you can't understand what they're doing, you just play straight into their hands, every time. Once more: It's not your fault.
These days, your classmates call you names--ugly, freak, psycho, loser. They call you these things because they don't know you, don't care to and/or don't want to. You're trying so hard to force yourself into their world, with little to no success. But you will have friends one day, Amy. Better still, you won't have to fight for their friendship--they will come to you. I know how unbelievable that seems, especially since you feel like no one wants to be around you at all, not even your parents. But you are loved, even if you don't realize it. You just have to learn how to love yourself.
There are some things that you are good at, Amy. Like writing. You just started writing some poems, and were happy when you saw them published in the local paper (your mom and dad sent them in for you). I have three words of advice for you: Keep doing it. Right now, you write because it's an escape from the world around you, and you don't care about being "good" at it. You'll get a bit of a competitive streak in 8th grade (when you'll come in second place in the Charles Dickens poetry contest, and will be angry at yourself for not winning), but writing will become an important part of your life after that. In fact, one day you won't just be writing for yourself--you'll be writing to help other people. And your writing will help people, even when you don't realize it. So you've got to keep at it.
It's hard to think that you're good at anything when people are constantly telling you that everything you do and are is wrong. In middle and high school, your fellow classmates will tell you to your face to kill yourself, and that no one wants you around, or would care if you were gone. Don't listen to them. I know it's difficult, and their words will go right into you, but they aren't worth it. You are a good person, a person worth having around, and you'd make so many people sad if you were gone. The world is going to need you when you grow up, Amy, so you have to get there. You have to make it through these dark days, because you're going to make a difference in the future. Someday, people will want to hear what you have to say, and you won't believe it, at first. But it will be meaningful, and wonderful. You're going to have to take a lot of crap and go through a lot of pain to get there, but I promise you, it will be worth it.
My time with you is now growing short, young Amy. I hope that some of the things I've said have brought you comfort, or at least given you assurance that there is, indeed, light at the end of this tunnel. In short: things will get better. Lots of people will say that to you, and you'll think that they're crazy or just trying to make you feel better, but it's really, honestly, true. You're an incredibly special, talented girl, and right now you're toiling in obscurity (as so many great artists do), but someday the world is going to see how amazing you are, and all you'll think is, "Where were you people when I was younger?" The future seems far away, almost impossible to think about, but don't be afraid to think about it. You're not even sure if you're going to have one, but you will. You will. And I will end this by saying three words that you don't hear very often (even when your mother says them to you), three words that you'll be desperate to hear when you get older (especially from an aesthetically gifted member of the opposite sex), but that seem very off in the distance right now: I love you. I love you, my younger, high-strung, spastic, uniquely wonderful self. And I'll be here waiting for you. See you in fifteen years!
Love and Many, Many Hugs (which you'll get a lot of when you meet a guy named Dan--trust me on this),
Your 26-year-old Self."
Saturday, April 25, 2009
Edison School District - "No Parent Left Behind" night
So, as most of us know, April is Autism Awareness Month, and it's the month of the year in which I seem to receive the most business, public speaking gig-wise. This coming Tuesday, for example, I have two(!) speaking gigs: one in Bedford, NY with middle- and high-schoolers, and one in Stamford, CT with a parent group. Last Thursday, I spoke at Edison High School in Edison, NJ as part of their "No Parent Left Behind III" night. There, I delivered the keynote address, and a short Q&A session followed. My business manager, Nicole, was kind enough to film the talk for me, and I uploaded the video yesterday. So, here it is, my keynote address at Edison School District's "No Parent Left Behind III" night on April 23, 2009 (click to open in a separate window if you can't see it full-size here):
If you'd like to pass it on, the URL is http://www.megavideo.com/?v=3143Z11X (I had to use Megavideo because it's too big for Youtube). Thanks, and please be sure to let me know what you think!
If you'd like to pass it on, the URL is http://www.megavideo.com/?v=3143Z11X (I had to use Megavideo because it's too big for Youtube). Thanks, and please be sure to let me know what you think!
Wednesday, March 4, 2009
Thoughts on the Abandoned
This morning, I saw on my Facebook friends list that someone had posted a link to photographs of old architectural buildings, hospitals and other facilities left to fall into disrepair when they were decommissioned from use. The photographs were wonderful, eerie and spectacular, and looking at them felt like walking into the past. At the same time, though, a crawling fear slowly worked its way up my spine, because some of the buildings that were photographed were once insane asylums and hospitals for the mentally ill. The rooms were dark, narrow, some with only small peepholes out of which to catch a glimpse of the hallway and the world outside.
Many of these hospitals were for violent inmates, but I could tell that they'd also housed those with mental illnesses such as schizophrenia, dissociative identity disorder, manic depression, and many others. The gnawing pit in my stomach heightened to almost deafening proportions when I realized one other population that most certainly would've been found in these facilities in years past: individuals on the autism spectrum.
It's well-known that, in the '50s and '60s, a diagnosis of autism was almost immediately followed by the words, "Have your child institutionalized." There was no thought of an autistic child remaining at home with their family. These children were seen as hopeless, and they were sent to where society locked away all of its monsters, to a mental institution. Looking at the pictures that I saw, the tiny cots supported by rusted bed springs, sparsely furnished "rooms" with little to no light, and the almost pervasive presence of varying shades of blue on the walls of the common areas, I could not help but think that any sense of hopelessness would be intensified by these places, or maybe wouldn't even begin until after these individuals were sent there. One photograph that particularly haunted me showed a view of the Statue of Liberty in the background, seen from behind a pane of partially broken glass. Not a more powerful symbol of the institutional experience exists, at least that I have seen.
At one point in the not-too-distant past, someone told my parents to have me institutionalized. I don't know who this person is, as my parents won't tell me, but all I can think is that if even one voice would still proffer that as a solution now, there would have been a unanimous choir of voices twenty, thirty, forty years ago. I doubt I would have even been properly diagnosed back then, but the decision to lock me away would go unquestioned. I'm not saying that my parents would be that way, but society as a whole did not want people like me walking around freely in the daylight, and would have kept me locked in the dark for the rest of my life.
I tend to often harp about being born in the wrong time period. Indeed, I am an ardent lover of all things retro, and I would still build a time machine and travel back to the late '60s if I could. But the fear still plagues me. I'm able to more or less "pass" now, at the age of 25, as a "normal" person. If I were given the choice, however, to be a young person in the '60s, I would want to be a neurotypical one, because all of the things that I'd want to do, things that I am capable of doing now as a person with Asperger's, I do not think I could do back then, unless I were neurotypical. The only way I can see this being otherwise is if I were a part of the counterculture movement, because I know there's no way I could fit into the mainstream. I think that is why I've always felt so drawn to the '60s, because the hippies were the misfits of the time, the ones who didn't subscribe to the ideals and preconceived notions set forth by society. That's sort of been my experience my entire life, and I believe I would've felt at home among them because we'd be such kindred spirits.
I realize how convoluted everything I'm saying sounds, and it does bother me that I even feel like I would need to be neurotypical for any reason, but to me, it seems to be the only way I could survive under certain specific circumstances. I'm incredibly lucky and fortunate to even be as well-off as I am right now. There are so many things that could have led to my downfall in the past, but I've managed to stay on course. Even one misstep, one wrong person in my life or my parents' life who could've influenced them and convinced them to give up on me could have led to me being in one of those places in the photographs. There are still moments, even now, when I see what might have been and shudder with the knowledge of how, historically speaking, I am still within a hair's breadth of those empty rooms. When I looked at those photographs, I could feel the cold air in those rooms enveloping me. I think in some way I will always be running from that, always looking over my shoulder, hoping that it's far behind. Praying, silently, that I manage to escape that old fate, before it catches up with me.
Many of these hospitals were for violent inmates, but I could tell that they'd also housed those with mental illnesses such as schizophrenia, dissociative identity disorder, manic depression, and many others. The gnawing pit in my stomach heightened to almost deafening proportions when I realized one other population that most certainly would've been found in these facilities in years past: individuals on the autism spectrum.
It's well-known that, in the '50s and '60s, a diagnosis of autism was almost immediately followed by the words, "Have your child institutionalized." There was no thought of an autistic child remaining at home with their family. These children were seen as hopeless, and they were sent to where society locked away all of its monsters, to a mental institution. Looking at the pictures that I saw, the tiny cots supported by rusted bed springs, sparsely furnished "rooms" with little to no light, and the almost pervasive presence of varying shades of blue on the walls of the common areas, I could not help but think that any sense of hopelessness would be intensified by these places, or maybe wouldn't even begin until after these individuals were sent there. One photograph that particularly haunted me showed a view of the Statue of Liberty in the background, seen from behind a pane of partially broken glass. Not a more powerful symbol of the institutional experience exists, at least that I have seen.
At one point in the not-too-distant past, someone told my parents to have me institutionalized. I don't know who this person is, as my parents won't tell me, but all I can think is that if even one voice would still proffer that as a solution now, there would have been a unanimous choir of voices twenty, thirty, forty years ago. I doubt I would have even been properly diagnosed back then, but the decision to lock me away would go unquestioned. I'm not saying that my parents would be that way, but society as a whole did not want people like me walking around freely in the daylight, and would have kept me locked in the dark for the rest of my life.
I tend to often harp about being born in the wrong time period. Indeed, I am an ardent lover of all things retro, and I would still build a time machine and travel back to the late '60s if I could. But the fear still plagues me. I'm able to more or less "pass" now, at the age of 25, as a "normal" person. If I were given the choice, however, to be a young person in the '60s, I would want to be a neurotypical one, because all of the things that I'd want to do, things that I am capable of doing now as a person with Asperger's, I do not think I could do back then, unless I were neurotypical. The only way I can see this being otherwise is if I were a part of the counterculture movement, because I know there's no way I could fit into the mainstream. I think that is why I've always felt so drawn to the '60s, because the hippies were the misfits of the time, the ones who didn't subscribe to the ideals and preconceived notions set forth by society. That's sort of been my experience my entire life, and I believe I would've felt at home among them because we'd be such kindred spirits.
I realize how convoluted everything I'm saying sounds, and it does bother me that I even feel like I would need to be neurotypical for any reason, but to me, it seems to be the only way I could survive under certain specific circumstances. I'm incredibly lucky and fortunate to even be as well-off as I am right now. There are so many things that could have led to my downfall in the past, but I've managed to stay on course. Even one misstep, one wrong person in my life or my parents' life who could've influenced them and convinced them to give up on me could have led to me being in one of those places in the photographs. There are still moments, even now, when I see what might have been and shudder with the knowledge of how, historically speaking, I am still within a hair's breadth of those empty rooms. When I looked at those photographs, I could feel the cold air in those rooms enveloping me. I think in some way I will always be running from that, always looking over my shoulder, hoping that it's far behind. Praying, silently, that I manage to escape that old fate, before it catches up with me.
Saturday, February 28, 2009
"I Can Cook, I Can Write" - Now in the Spring '09 issue of ASQ!
Hello, folks! Just days after I put up my last blog entry, I received my copies of Autism Spectrum Quarterly in the mail! So, as promised, I am now posting my article, titled "I Can Write, I Can Cook: Asperger's Syndrome, Prenatal Testing, and the Journey to Existence."
I know that prenatal testing is somewhat of a controversial topic, and while it is not the heart of my piece, it does play a strong role in it. The genesis of the piece actually came after a post I'd read on a message board months ago that referred to individuals with Down's Syndrome as "glorified pets." The same person who wrote that also pondered why anyone would want to bring into this world "someone who will never be self-sufficient." Those words pierced me like a blade, as I am not yet what one might define as "self-sufficient," and I wondered then how many people, both in the past and now, have or would call my existence into question because of that. So this piece was born of that fear, that pain, and my desire to redefine what "self-sufficient" really means.
Also, if anyone is wondering, yes, I did write a blog about this, and that blog is what became this article. I've edited it and tweaked it a bit since the original writing, so the finished product is different from the initial blog that I wrote.
So, without further ado, I present you now with my article, "I Can Cook, I Can Write: Asperger's Syndrome, Prenatal Testing, and the Journey to Existence," currently featured in the Spring 2009 issue of Autism Spectrum Quarterly:
Page One
Page Two
EDITED TO ADD: Here is the original text, for those having difficulty reading the article (I apologize if anyone has had trouble with the jpegs).
"I Can Cook, I Can Write: Asperger's Syndrome, Prenatal Testing, and the Journey to Existence"
by Amy Gravino
Let me tell you a little story.
Then
Many years ago, I attended a meeting. It was one of several, actually, but each one was the same. I sat in a conference room at my old elementary school, my parents on either side of me, and the director of special education at the head of the table. The other faces at the table shifted over time, but those I remember most were the school psychologist and guidance counselor in elementary school, and the speech-language pathologist in middle and high school.
At this particular meeting, I was 11 years old and right in the middle of fifth grade. I knew very little about what the adults around me were discussing, or why I was there. Words like IEP didn't mean anything back then. Only the grass and the long, asphalt path outside the window caught my attention, flanked by the red, yellow, green, and purple-painted walls of the school building. The sun was so hot that I could “feel” the heat radiating off the pavement. The light was so bright that it hurt my eyes, in stark contrast to the darkness in which I sat. My ears strained to listen to the sound of children's voices off in the distance—the sparkling, youthful laughter I longed so much to be a part of, but could not.
What I did not know then was that phrases of abject hopelessness were being whispered into my parents' ears, phrases like—sheltered workplace, special school, will never go to college. I sat there, oblivious to all of this, not having any idea of how little faith the people who were supposed to be looking after me had in my abilities. No one in that meeting—or any meeting before or after—spoke a word to me, or asked me how I felt. Perhaps I would not have been so articulate in my response, but what mattered most was that they acted as if I was not capable of responding at all. How could they know what I could or could not do—or how I felt or what I thought—if they never asked?
Now
I am 25 years old. I’ve graduated from high school, along with the rest of my peers. I went on to college for four years and obtained a Bachelor’s degree in English. I'm now in graduate school working toward a Master of Arts degree in Applied Behavior Analysis. I cook. I shop. I do my own laundry. I drive. I write. I speak publicly at conferences, workshops, and meetings. I tell jokes. I can still fit into my original purple Cabbage Patch slippers from the '80s. I tutor undergrads in the writing lab at school. I'm writing a book about my experiences in the world of relationships and dating. I can program pretty much any electronic device without looking at the instructions. I moved 3,000 miles away from home and lived on the other side of the country for two years. I memorize phone numbers and lyrics to entire Broadway musicals. I travel.
BUT, I do not pay my own bills, and I do not have a "regular job." My parents pay the rent for the apartment in which I’m living in New Jersey. Despite all of the things I've mentioned that I CAN do, I am not (yet) self-sufficient. I can’t help but wonder—is self-sufficiency the standard by which I (or we) are judged?
"Collateral Damage" in the Quest for Prenatal Testing
There are those who advocate for prenatal testing who would look at a person like me, and instead of seeing my accomplishments and all that I’ve achieved, focus only on what I’ve failed to do. They would argue that I should not exist, that I am a drain, both on the economy and on my parents. A waste—at least that’s how it seems.
I have struggled for a very, very long time. Although I have not had to do so explicitly, I have, in many ways, had to fight for my right to have dreams; to contribute to the world; and, yes, to exist. There is no way to describe how I feel when I consider that there are people in the world who would be happy to do away with my existence; that they, or anyone, could feel that because I am not self-sufficient, I should not exist. Those people in that meeting years ago—those so-called experts—believed that I would never be self-sufficient. I admit that I am not there yet, and I have to deal with the constant fear of perhaps not getting there, and the self-doubt that plagues my thoughts from time to time, especially late at night when I’m lying in bed, unable to sleep. But I still have hope that I will get there.
For those who think my thoughts resemble a science fiction film depicting a far-off and dystopian future, consider this: ninety percent of fetuses detected to have Down syndrome in prenatal testing end up being aborted. Individuals currently living with Down syndrome deal with many difficulties, to be sure; but I envy these individuals for one reason and one reason only: the obviousness of their condition. Down syndrome is characterized by an appearance that is visible to the human eye, and because of that, the difficulties of those with the condition are recognized and understood. And while I don't envy the stares that some of these individuals may attract, or the rude comments that they and their families may have to contend with, I applaud their ability to be who they are, no matter what, especially in a world that calls into question their right to exist simply by creating medical tests that all too often result in their eradication.
Unlike people with Down syndrome who cannot hide who they are, I wear a mask of "normalcy." But it doesn't change who I am. It doesn't change the fact that sometimes I feel sickened by myself, and the fact that my parents are supposed to be enjoying their retirement years, instead of continuing to support me. I know that they are happy to do it. But, even so, the guilt persists, and it is exacerbated by the fervent race for medical tests that can detect autism in utero.
I have often wondered if my parents would have aborted me if they had known that I would be born with Asperger syndrome; if they had known that 25 years down the line, I still wouldn't have a "real" job. These and so many other questions are even more difficult to ignore with the rapid development of a prenatal test to determine if a child has autism.
These are complex issues, faced not only by individuals with autism and Asperger's and their families, but also by individuals with Down syndrome and their families. In my opinion, it is a foolhardy endeavor to boil these issues down to a few chromosomes and medical tests, especially when it places many of us with autism and Asperger’s syndrome in the position of having to fight for our right to exist.
Editor’s Note: Amy’s interview by Liane Holliday Willey appeared in ASQ’s CEO column in the winter 2008 issue of ASQ.
I know that prenatal testing is somewhat of a controversial topic, and while it is not the heart of my piece, it does play a strong role in it. The genesis of the piece actually came after a post I'd read on a message board months ago that referred to individuals with Down's Syndrome as "glorified pets." The same person who wrote that also pondered why anyone would want to bring into this world "someone who will never be self-sufficient." Those words pierced me like a blade, as I am not yet what one might define as "self-sufficient," and I wondered then how many people, both in the past and now, have or would call my existence into question because of that. So this piece was born of that fear, that pain, and my desire to redefine what "self-sufficient" really means.
Also, if anyone is wondering, yes, I did write a blog about this, and that blog is what became this article. I've edited it and tweaked it a bit since the original writing, so the finished product is different from the initial blog that I wrote.
So, without further ado, I present you now with my article, "I Can Cook, I Can Write: Asperger's Syndrome, Prenatal Testing, and the Journey to Existence," currently featured in the Spring 2009 issue of Autism Spectrum Quarterly:
Page Two
EDITED TO ADD: Here is the original text, for those having difficulty reading the article (I apologize if anyone has had trouble with the jpegs).
"I Can Cook, I Can Write: Asperger's Syndrome, Prenatal Testing, and the Journey to Existence"
by Amy Gravino
Let me tell you a little story.
Then
Many years ago, I attended a meeting. It was one of several, actually, but each one was the same. I sat in a conference room at my old elementary school, my parents on either side of me, and the director of special education at the head of the table. The other faces at the table shifted over time, but those I remember most were the school psychologist and guidance counselor in elementary school, and the speech-language pathologist in middle and high school.
At this particular meeting, I was 11 years old and right in the middle of fifth grade. I knew very little about what the adults around me were discussing, or why I was there. Words like IEP didn't mean anything back then. Only the grass and the long, asphalt path outside the window caught my attention, flanked by the red, yellow, green, and purple-painted walls of the school building. The sun was so hot that I could “feel” the heat radiating off the pavement. The light was so bright that it hurt my eyes, in stark contrast to the darkness in which I sat. My ears strained to listen to the sound of children's voices off in the distance—the sparkling, youthful laughter I longed so much to be a part of, but could not.
What I did not know then was that phrases of abject hopelessness were being whispered into my parents' ears, phrases like—sheltered workplace, special school, will never go to college. I sat there, oblivious to all of this, not having any idea of how little faith the people who were supposed to be looking after me had in my abilities. No one in that meeting—or any meeting before or after—spoke a word to me, or asked me how I felt. Perhaps I would not have been so articulate in my response, but what mattered most was that they acted as if I was not capable of responding at all. How could they know what I could or could not do—or how I felt or what I thought—if they never asked?
Now
I am 25 years old. I’ve graduated from high school, along with the rest of my peers. I went on to college for four years and obtained a Bachelor’s degree in English. I'm now in graduate school working toward a Master of Arts degree in Applied Behavior Analysis. I cook. I shop. I do my own laundry. I drive. I write. I speak publicly at conferences, workshops, and meetings. I tell jokes. I can still fit into my original purple Cabbage Patch slippers from the '80s. I tutor undergrads in the writing lab at school. I'm writing a book about my experiences in the world of relationships and dating. I can program pretty much any electronic device without looking at the instructions. I moved 3,000 miles away from home and lived on the other side of the country for two years. I memorize phone numbers and lyrics to entire Broadway musicals. I travel.
BUT, I do not pay my own bills, and I do not have a "regular job." My parents pay the rent for the apartment in which I’m living in New Jersey. Despite all of the things I've mentioned that I CAN do, I am not (yet) self-sufficient. I can’t help but wonder—is self-sufficiency the standard by which I (or we) are judged?
"Collateral Damage" in the Quest for Prenatal Testing
There are those who advocate for prenatal testing who would look at a person like me, and instead of seeing my accomplishments and all that I’ve achieved, focus only on what I’ve failed to do. They would argue that I should not exist, that I am a drain, both on the economy and on my parents. A waste—at least that’s how it seems.
I have struggled for a very, very long time. Although I have not had to do so explicitly, I have, in many ways, had to fight for my right to have dreams; to contribute to the world; and, yes, to exist. There is no way to describe how I feel when I consider that there are people in the world who would be happy to do away with my existence; that they, or anyone, could feel that because I am not self-sufficient, I should not exist. Those people in that meeting years ago—those so-called experts—believed that I would never be self-sufficient. I admit that I am not there yet, and I have to deal with the constant fear of perhaps not getting there, and the self-doubt that plagues my thoughts from time to time, especially late at night when I’m lying in bed, unable to sleep. But I still have hope that I will get there.
For those who think my thoughts resemble a science fiction film depicting a far-off and dystopian future, consider this: ninety percent of fetuses detected to have Down syndrome in prenatal testing end up being aborted. Individuals currently living with Down syndrome deal with many difficulties, to be sure; but I envy these individuals for one reason and one reason only: the obviousness of their condition. Down syndrome is characterized by an appearance that is visible to the human eye, and because of that, the difficulties of those with the condition are recognized and understood. And while I don't envy the stares that some of these individuals may attract, or the rude comments that they and their families may have to contend with, I applaud their ability to be who they are, no matter what, especially in a world that calls into question their right to exist simply by creating medical tests that all too often result in their eradication.
Unlike people with Down syndrome who cannot hide who they are, I wear a mask of "normalcy." But it doesn't change who I am. It doesn't change the fact that sometimes I feel sickened by myself, and the fact that my parents are supposed to be enjoying their retirement years, instead of continuing to support me. I know that they are happy to do it. But, even so, the guilt persists, and it is exacerbated by the fervent race for medical tests that can detect autism in utero.
I have often wondered if my parents would have aborted me if they had known that I would be born with Asperger syndrome; if they had known that 25 years down the line, I still wouldn't have a "real" job. These and so many other questions are even more difficult to ignore with the rapid development of a prenatal test to determine if a child has autism.
These are complex issues, faced not only by individuals with autism and Asperger's and their families, but also by individuals with Down syndrome and their families. In my opinion, it is a foolhardy endeavor to boil these issues down to a few chromosomes and medical tests, especially when it places many of us with autism and Asperger’s syndrome in the position of having to fight for our right to exist.
Editor’s Note: Amy’s interview by Liane Holliday Willey appeared in ASQ’s CEO column in the winter 2008 issue of ASQ.
Monday, February 23, 2009
Book News + An Exciting Conference Coming Up!
I can't believe I haven't updated since December. It's not that a great many life-shattering events have occurred since then (they haven't); but it's a new year now, and it just isn't right that I haven't rung it in here on my little blog of bloggishness.
The first bit of news I can share is that I've (finally) created a schedule for writing my book. My mom came over a few weekends ago, and we sat down and mapped out which chapters I'm going to write during each week. I have these color-coded printouts of every month from January to May hanging neatly up above my desk. The goal is to have the writing itself done by April 1st, and the editing done by the end of May. This is all provided that I stick to the schedule, which is a hell of a lot easier said than done. But I will try my best.
In other news, the article that I wrote for the Spring 2009 issue of Autism Spectrum Quarterly has finally gone to press! It's called "I Can Cook, I Can Write: Prenatal Testing, Asperger Syndrome, and the Journey to Existence," and you can read a little blurb about it here: http://www.asquarterly.com on ASQ's website. I'll post the full article up here, as was done with the last one, once I have a copy of it and have it online.
I have some other things I'd like to write about, but I'm going to reserve them for a future entry and instead take a moment to tell you all about a great event that's coming up. Caldwell College, where I attend graduate school, is having a conference in April titled, "Innovations in Autism Treatment and Applied Behavior Analysis: A Conference for Professionals, Teachers, Parents, and Caregivers of Children with Autism." It will feature over 10 professional luminaries in the field of behavior analysis, including Dr. Bill Heward, BCBA; Dr. Gina Green, BCBA; Dr. Gregory MacDuff, and more.
The conference is scheduled to take place on two consecutive Fridays; April 17th and April 24th. For more information, including registration details, click the banner below:
I know it may seem slightly stodgy and more research-based than many parents find accessible, but I cannot recommend this conference highly enough. These speakers are all incredibly well-versed in ABA, and believe in working toward the goal of helping to improve the lives of individuals with autism and their families. That's where the "applied" in "applied behavior analysis" comes in. These people aren't standing in a cold laboratory all day long. They're going out into schools and other settings in the community, working with paraprofessionals and parents alike to heighten the quality of life for people with autism. Anyone who's looking to learn more about ABA, or to keep abreast of the latest autism research developments will not want to miss this conference.
Attendees have the option of registering for one or both days of the conference, and if you register for both at the same time, there is a reduced fee. To see the full conference brochure, click here (you must have Adobe Acrobat to view it). Make sure to register as soon as possible, because registration fees increase after March 1st. So go get a-clicking and sign up today!
The first bit of news I can share is that I've (finally) created a schedule for writing my book. My mom came over a few weekends ago, and we sat down and mapped out which chapters I'm going to write during each week. I have these color-coded printouts of every month from January to May hanging neatly up above my desk. The goal is to have the writing itself done by April 1st, and the editing done by the end of May. This is all provided that I stick to the schedule, which is a hell of a lot easier said than done. But I will try my best.
In other news, the article that I wrote for the Spring 2009 issue of Autism Spectrum Quarterly has finally gone to press! It's called "I Can Cook, I Can Write: Prenatal Testing, Asperger Syndrome, and the Journey to Existence," and you can read a little blurb about it here: http://www.asquarterly.com on ASQ's website. I'll post the full article up here, as was done with the last one, once I have a copy of it and have it online.
I have some other things I'd like to write about, but I'm going to reserve them for a future entry and instead take a moment to tell you all about a great event that's coming up. Caldwell College, where I attend graduate school, is having a conference in April titled, "Innovations in Autism Treatment and Applied Behavior Analysis: A Conference for Professionals, Teachers, Parents, and Caregivers of Children with Autism." It will feature over 10 professional luminaries in the field of behavior analysis, including Dr. Bill Heward, BCBA; Dr. Gina Green, BCBA; Dr. Gregory MacDuff, and more.
The conference is scheduled to take place on two consecutive Fridays; April 17th and April 24th. For more information, including registration details, click the banner below:
I know it may seem slightly stodgy and more research-based than many parents find accessible, but I cannot recommend this conference highly enough. These speakers are all incredibly well-versed in ABA, and believe in working toward the goal of helping to improve the lives of individuals with autism and their families. That's where the "applied" in "applied behavior analysis" comes in. These people aren't standing in a cold laboratory all day long. They're going out into schools and other settings in the community, working with paraprofessionals and parents alike to heighten the quality of life for people with autism. Anyone who's looking to learn more about ABA, or to keep abreast of the latest autism research developments will not want to miss this conference.
Attendees have the option of registering for one or both days of the conference, and if you register for both at the same time, there is a reduced fee. To see the full conference brochure, click here (you must have Adobe Acrobat to view it). Make sure to register as soon as possible, because registration fees increase after March 1st. So go get a-clicking and sign up today!
Monday, December 29, 2008
This is the Voice In Your Head Speaking...
Something occurred two weeks ago, and it's been bothering me since it happened. Not as much now as it did then, but it still weighs on my mind. On December 15h, I spoke at an Asperger Women's group at an autism center on Long Island. Over the last few months, I'd been corresponding via telephone with the woman who runs the group, trying to find a date that worked for me to come in and speak to the group. She seemed like a nice enough woman, and I was happy to have been asked to act as a guest speaker. When I got there, however, it was a different story.
I first went into the woman's office so we could discuss what I would be talking about in the meeting. She and another woman who co-runs the group were there, and at first, they seemed perfectly nice and eager to have me speak to the group. But the primary woman kept insisting that I say something to the women along the lines of how I was told that I could join the group, but felt that I wouldn't be able to because of the distance, and so I chose to speak at it instead. I understood her reasoning for this after she told me that the women in the group questioned why I was speaking to them instead of being a member myself. That made sense to me, to try and appeal to the women and not alienate them, but I couldn't and still don't understand why this woman seemed to be treating me as though I were like the other women in the group, and not someone who'd come to speak to them.
I need to explain that last part more clearly, because I know it sounds strange the way that I said it. I do not, in any way, shape, or form, think that I am better than the women who are in that support group. The reason that I no longer attend support group meetings is because I never really felt like I fit in at them, and although they did serve a purpose at one time, I am no longer at a point in my life where I would need a support group as that type of resource. I have friends with whom I speak and share my triumphs and woes, not to mention the fact that I also tell my parents pretty much everything. So I'm no longer at a juncture where a support group would be of great assistance to me, but in no way am I demeaning the value of the group to these other women. I would rather another person be in the group instead of me, if they could get more out of it and have it be more useful to them than it would be to me.
That said, I tried explaining all of this to the woman, but I don't know if it really got through. She kept saying to me that I should tell the women how I still have my own issues to work on--which I do, this is true, and I can understand it being said for the purpose of inspiring a spirit of camaraderie and friendship--but I felt like her point in saying it to me was for a different reason. She just kept reminding me that I'm "one of them" ('them' being the other women in the group) and that I could come to a meeting anytime to work on my issues. Weirdness abounded as her repetition of the phrase grew, and I became ever more uncomfortable.
I know that I'm not what one might call an "authority" on anything. I have no capitalized letters after my name, nor any really notable accomplishments to speak of up to this point. But why on God's green and verdant landscape would she ask me to speak to this group of women if she didn't think I had something to share with them? If she didn't think that I've achieved something that they haven't? If I really am "one of them," then I should be sitting in that group engaging in what certainly felt like organized and staged dialogue; conversations facilitated by neurotypical puppetmasters. If there's one thing I despise about any support group that is run by individuals not on the spectrum, it's that: the almost plasticine need to force conversation between the group's participants. Their intentions are all well and good, to be sure, but it still irks me to have to listen to their tones of voice sounding so faux enthusiastic.
Maybe I am reading too much into this and misunderstanding it all, as per usual. But my encounter with that woman has made me question everything about myself and my so-called "expertise" as a public speaker. The truth is, when it comes down to it, the most important thing isn't what that woman or any other group facilitator thinks of me; the most important thing is if I was able to reach the participants in the group, if I was able to make sense to them and help them in some way, even a small way. I've never encountered a situation like this before, where I felt a sort of lack of respect coming at me from the facilitator of a group. I know that I'm on the spectrum, but I'm there speaking to other women who are also on the spectrum, and frankly, I think I'm better equipped to be running that group than that woman was. Call it blasphemous or crazy if you like, but how or in what way could she know how to talk to those women or get them to open up better than I could? I don't know. I just don't know.
I fear now that perhaps I am not being taken as seriously as I thought I was; that teachers in schools or support group leaders don't see me in the light that I thought they had. The director of Special Ed in the Port Jefferson school district hasn't contacted me since I waltzed into his office over the summer with my curriculum vitae. Yet, I heard from my father that a woman he ran into recently (who used to be the tenant in our old house that we rent out and who was one of my nurses in elementary school) had herself run into this man, and he'd been raving wildly about me. Maybe I'm a little slow on the uptake here or not quite understanding this all clearly, but I don't see how the guy could be raving about me when he hasn't spoken a word to me, electronically or otherwise, since August. Sigh. Respect, people. I don't think it's too much to ask for.
In other, far more random news, I got straight-As this semester (I got an A- on my research proposal paper, which is going to be the foundation for my actual thesis next year) and my GPA is up to a 3.53. I also have received news that the ARTS documentary that I'm in is locked and finished, and will be out on DVD in mid-January. So look for more tasty tidbits on that in here as I find out more info. I've also gotten back in touch with the literary manager in Los Angeles with whom I worked on ARTS, to seek her assistance in breaking into the world of television, and she's agreed to help me in any way she can. So, while I may not quite be ending 2008 with a bang, I think 2009 is going to get off to a rollicking good start. I'm just tired of things happening on other people's terms rather than my own, and so I think 2009 is going to be about making that happen. I just wish these bumps in the road with doubting myself and my abilities would go away for good. All in good time, I guess. All in good time.
I first went into the woman's office so we could discuss what I would be talking about in the meeting. She and another woman who co-runs the group were there, and at first, they seemed perfectly nice and eager to have me speak to the group. But the primary woman kept insisting that I say something to the women along the lines of how I was told that I could join the group, but felt that I wouldn't be able to because of the distance, and so I chose to speak at it instead. I understood her reasoning for this after she told me that the women in the group questioned why I was speaking to them instead of being a member myself. That made sense to me, to try and appeal to the women and not alienate them, but I couldn't and still don't understand why this woman seemed to be treating me as though I were like the other women in the group, and not someone who'd come to speak to them.
I need to explain that last part more clearly, because I know it sounds strange the way that I said it. I do not, in any way, shape, or form, think that I am better than the women who are in that support group. The reason that I no longer attend support group meetings is because I never really felt like I fit in at them, and although they did serve a purpose at one time, I am no longer at a point in my life where I would need a support group as that type of resource. I have friends with whom I speak and share my triumphs and woes, not to mention the fact that I also tell my parents pretty much everything. So I'm no longer at a juncture where a support group would be of great assistance to me, but in no way am I demeaning the value of the group to these other women. I would rather another person be in the group instead of me, if they could get more out of it and have it be more useful to them than it would be to me.
That said, I tried explaining all of this to the woman, but I don't know if it really got through. She kept saying to me that I should tell the women how I still have my own issues to work on--which I do, this is true, and I can understand it being said for the purpose of inspiring a spirit of camaraderie and friendship--but I felt like her point in saying it to me was for a different reason. She just kept reminding me that I'm "one of them" ('them' being the other women in the group) and that I could come to a meeting anytime to work on my issues. Weirdness abounded as her repetition of the phrase grew, and I became ever more uncomfortable.
I know that I'm not what one might call an "authority" on anything. I have no capitalized letters after my name, nor any really notable accomplishments to speak of up to this point. But why on God's green and verdant landscape would she ask me to speak to this group of women if she didn't think I had something to share with them? If she didn't think that I've achieved something that they haven't? If I really am "one of them," then I should be sitting in that group engaging in what certainly felt like organized and staged dialogue; conversations facilitated by neurotypical puppetmasters. If there's one thing I despise about any support group that is run by individuals not on the spectrum, it's that: the almost plasticine need to force conversation between the group's participants. Their intentions are all well and good, to be sure, but it still irks me to have to listen to their tones of voice sounding so faux enthusiastic.
Maybe I am reading too much into this and misunderstanding it all, as per usual. But my encounter with that woman has made me question everything about myself and my so-called "expertise" as a public speaker. The truth is, when it comes down to it, the most important thing isn't what that woman or any other group facilitator thinks of me; the most important thing is if I was able to reach the participants in the group, if I was able to make sense to them and help them in some way, even a small way. I've never encountered a situation like this before, where I felt a sort of lack of respect coming at me from the facilitator of a group. I know that I'm on the spectrum, but I'm there speaking to other women who are also on the spectrum, and frankly, I think I'm better equipped to be running that group than that woman was. Call it blasphemous or crazy if you like, but how or in what way could she know how to talk to those women or get them to open up better than I could? I don't know. I just don't know.
I fear now that perhaps I am not being taken as seriously as I thought I was; that teachers in schools or support group leaders don't see me in the light that I thought they had. The director of Special Ed in the Port Jefferson school district hasn't contacted me since I waltzed into his office over the summer with my curriculum vitae. Yet, I heard from my father that a woman he ran into recently (who used to be the tenant in our old house that we rent out and who was one of my nurses in elementary school) had herself run into this man, and he'd been raving wildly about me. Maybe I'm a little slow on the uptake here or not quite understanding this all clearly, but I don't see how the guy could be raving about me when he hasn't spoken a word to me, electronically or otherwise, since August. Sigh. Respect, people. I don't think it's too much to ask for.
In other, far more random news, I got straight-As this semester (I got an A- on my research proposal paper, which is going to be the foundation for my actual thesis next year) and my GPA is up to a 3.53. I also have received news that the ARTS documentary that I'm in is locked and finished, and will be out on DVD in mid-January. So look for more tasty tidbits on that in here as I find out more info. I've also gotten back in touch with the literary manager in Los Angeles with whom I worked on ARTS, to seek her assistance in breaking into the world of television, and she's agreed to help me in any way she can. So, while I may not quite be ending 2008 with a bang, I think 2009 is going to get off to a rollicking good start. I'm just tired of things happening on other people's terms rather than my own, and so I think 2009 is going to be about making that happen. I just wish these bumps in the road with doubting myself and my abilities would go away for good. All in good time, I guess. All in good time.
Wednesday, December 3, 2008
Controversial Conferences, An Interview, and a Really Big Move
My last update came over a month ago, and now Thanksgiving has already come and gone. Unbelievable! And so much has happened since I last posted here. In just the week after the Herstory 12th Anniversary Gala reading, I spoke at two more events: the Special Day for Special Kids at the West Hills Day Camp in Huntington, NY on October 26th, and the New Jersey State Federation of Women's Clubs Annual Fall Conference at the Bridgewater Marriott in Bridgewater, NJ on October 27th. In the weeks that followed, I spoke at a social skills group for adults on the spectrum at the JCC in Manhattan, and then at an Asperger Girls' group at the Faye J. Lindner Autism Center in Bethpage, NY.
Conference-wise, I spoke on the "Transitions to Independence in ASD" panel at Kean University's "Autism: Putting the Pieces Together" conference on November 21st. I had never even heard of the university or the conference until my business manager Nicole told me about it. She had initially asked if I wanted to vendor a table with her, as she was going to reserve a vendor table for her company, Learning By Design, LLC. I readily accepted her offer, and that was when she told me that she'd spoken to the woman running the conference and had told her about me, and now there was a possibility that I'd get to speak on one of the panels. We waited a little longer, and after not hearing back from that woman for a few weeks, I took the reins and sent her an e-mail myself, expressing my interest. She responded, saying that she'd love to have me speak at the conference on the "Transition" panel. The rest, as they say, is history.
Now, this conference was different from ones I'd attended in the past, in that the keynote speaker was a proponent of DIR/Floortime, an autism therapy created by Dr. Stanley Greenspan. In fact, the speaker was his own son, Jake Greenspan. I knew from my classes at school that there is no scientific evidence that validates the claims made by Greenspan. Indeed, there is not one empirically validated research study attesting to DIR/Floortime's effectiveness. But, I felt it best to go into the conference with an open mind, and I had not been shy about mentioning my affiliation with Caldwell College and the ABA program when asking to speak on the panel, so the fact that they wanted me to speak there had to mean that they were willing to welcome other disciplines and those who subscribe to them. That did make me feel more comfortable with being there.
My comfort level slowly started to decrease, however, when in his speech, Mr. Greenspan took a few shots at the methods and practices of ABA. Of course, he made a (thinly-veiled) attempt to disguise the fact that it was ABA about which he was speaking, but Nicole and I knew the truth. Now, I'm not one to take pot shots back at someone, but the whole time I was sitting there, all I could think was, "This guy is saying things, and at the same time, not saying anything at all!" It was baffling. I'd been surprised enough when he first came out onstage; I was expecting an older, bespectacled, somewhat nerdy fellow, perhaps one who wore a brown corduroy blazer. But, Jake Greenspan was, in fact, a hunky piece of man-beef to the nth degree. I was stunned. What was this could-be GQ model doing delivering a keynote speech at an autism conference? It didn't take me very long to catch on, though. He was a figurehead, a puppet for his father sent to represent him and his creation, DIR/Floortime. After all, who better to have standing onstage before an audience than a dashing young man who could easily woo and sway the masses? A very clever ploy, indeed.
Let's get one thing straight, though: this is not about finger-pointing or feuding. There are too many families, too many children and adults with autism spectrum disorders who need help and answers, to engage in petty, childish rivalry. That's what really grated my cheese about Mr. Greenspan's comments; instead of encouraging a partnership, instead of urging differing schools of therapy to work together and cooperate, he furthered an agenda of division and animosity. It's really just sad, because it's individuals on the spectrum who are losing out in the end. I'm not a saint by any stretch of the imagination, but I intend to do my absolute best to rise above trading jabs at conferences and vying for professional or personal glory. That's not what I care about. My interest lies solely with doing everything I can to raise autism and Asperger's syndrome awareness, and to help the people who are here now, fighting to survive in this world. That's what matters most.
A large part of the reason I haven't updated in so long is because on November 5th, I moved from my old apartment in Caldwell to a new one in Upper Montclair. I'm now living with one of my best friends, Dan, who is from Long Island. I feel that where I am now is a major upgrade from where I used to live, both physically and psychologically. Before, I was just renting a room in a house; now, the whole space (a third floor of a house) is mine (and Dan's). It's so relieving to be able to stretch my wings at last, and to be rid of the stressors that plagued me over the last few months. I'm still settling in and getting used to things, and the fact that this move was in the middle of the semester made things really hard, but it's becoming easier, bit by bit. I think this place is going to help me be much more productive, in terms of both writing my book and carving out a career as an autism liaison.
Finally, I have one more thing to share with you all: I'm in print again! I was interviewed by Liane Willey for the Winter 2008 issue of Autism Spectrum Quarterly magazine. Diane Twachtman-Cullen, the magazine's Editor-in-Chief, accepted for publication an article that I wrote (it'll be in the February 2009 issue), and asked if I would want to be interviewed by Liane for the "C.E.O." (Celebrations of Excellence and Originality) column, as a lead-in piece. I readily agreed, and the issue is now finally in print. I haven't received my hard copy yet, but my parents got theirs a few days ago, and I had my dad scan the article so that I could disseminate it around the Interwebs (and I will do the same when the February 2009 issue comes out). So, here it is! (Click on the images to make them bigger.) If the thumbnails don't work, click here and here to read the article.
Conference-wise, I spoke on the "Transitions to Independence in ASD" panel at Kean University's "Autism: Putting the Pieces Together" conference on November 21st. I had never even heard of the university or the conference until my business manager Nicole told me about it. She had initially asked if I wanted to vendor a table with her, as she was going to reserve a vendor table for her company, Learning By Design, LLC. I readily accepted her offer, and that was when she told me that she'd spoken to the woman running the conference and had told her about me, and now there was a possibility that I'd get to speak on one of the panels. We waited a little longer, and after not hearing back from that woman for a few weeks, I took the reins and sent her an e-mail myself, expressing my interest. She responded, saying that she'd love to have me speak at the conference on the "Transition" panel. The rest, as they say, is history.
Now, this conference was different from ones I'd attended in the past, in that the keynote speaker was a proponent of DIR/Floortime, an autism therapy created by Dr. Stanley Greenspan. In fact, the speaker was his own son, Jake Greenspan. I knew from my classes at school that there is no scientific evidence that validates the claims made by Greenspan. Indeed, there is not one empirically validated research study attesting to DIR/Floortime's effectiveness. But, I felt it best to go into the conference with an open mind, and I had not been shy about mentioning my affiliation with Caldwell College and the ABA program when asking to speak on the panel, so the fact that they wanted me to speak there had to mean that they were willing to welcome other disciplines and those who subscribe to them. That did make me feel more comfortable with being there.
My comfort level slowly started to decrease, however, when in his speech, Mr. Greenspan took a few shots at the methods and practices of ABA. Of course, he made a (thinly-veiled) attempt to disguise the fact that it was ABA about which he was speaking, but Nicole and I knew the truth. Now, I'm not one to take pot shots back at someone, but the whole time I was sitting there, all I could think was, "This guy is saying things, and at the same time, not saying anything at all!" It was baffling. I'd been surprised enough when he first came out onstage; I was expecting an older, bespectacled, somewhat nerdy fellow, perhaps one who wore a brown corduroy blazer. But, Jake Greenspan was, in fact, a hunky piece of man-beef to the nth degree. I was stunned. What was this could-be GQ model doing delivering a keynote speech at an autism conference? It didn't take me very long to catch on, though. He was a figurehead, a puppet for his father sent to represent him and his creation, DIR/Floortime. After all, who better to have standing onstage before an audience than a dashing young man who could easily woo and sway the masses? A very clever ploy, indeed.
Let's get one thing straight, though: this is not about finger-pointing or feuding. There are too many families, too many children and adults with autism spectrum disorders who need help and answers, to engage in petty, childish rivalry. That's what really grated my cheese about Mr. Greenspan's comments; instead of encouraging a partnership, instead of urging differing schools of therapy to work together and cooperate, he furthered an agenda of division and animosity. It's really just sad, because it's individuals on the spectrum who are losing out in the end. I'm not a saint by any stretch of the imagination, but I intend to do my absolute best to rise above trading jabs at conferences and vying for professional or personal glory. That's not what I care about. My interest lies solely with doing everything I can to raise autism and Asperger's syndrome awareness, and to help the people who are here now, fighting to survive in this world. That's what matters most.
A large part of the reason I haven't updated in so long is because on November 5th, I moved from my old apartment in Caldwell to a new one in Upper Montclair. I'm now living with one of my best friends, Dan, who is from Long Island. I feel that where I am now is a major upgrade from where I used to live, both physically and psychologically. Before, I was just renting a room in a house; now, the whole space (a third floor of a house) is mine (and Dan's). It's so relieving to be able to stretch my wings at last, and to be rid of the stressors that plagued me over the last few months. I'm still settling in and getting used to things, and the fact that this move was in the middle of the semester made things really hard, but it's becoming easier, bit by bit. I think this place is going to help me be much more productive, in terms of both writing my book and carving out a career as an autism liaison.
Finally, I have one more thing to share with you all: I'm in print again! I was interviewed by Liane Willey for the Winter 2008 issue of Autism Spectrum Quarterly magazine. Diane Twachtman-Cullen, the magazine's Editor-in-Chief, accepted for publication an article that I wrote (it'll be in the February 2009 issue), and asked if I would want to be interviewed by Liane for the "C.E.O." (Celebrations of Excellence and Originality) column, as a lead-in piece. I readily agreed, and the issue is now finally in print. I haven't received my hard copy yet, but my parents got theirs a few days ago, and I had my dad scan the article so that I could disseminate it around the Interwebs (and I will do the same when the February 2009 issue comes out). So, here it is! (Click on the images to make them bigger.) If the thumbnails don't work, click here and here to read the article.
Page One:
Page Two:
Monday, October 20, 2008
Herstory 12th Anniversary Gala & Luncheon
Yesterday, I read the introduction to my book, "The Naughty Autie," at Herstory's 12th Anniversary Gala and Luncheon, which was held at the Charles B. Wang Center at Stony Brook University. I think it went extraordinarily well, and I'm so happy to have gotten it on video so that I can share it with you all. The audio is also much clearer than that from the video of my Gersh Academy speech. So, without further ado, here is my reading (and if you'd like to pass it on, the link is http://www.youtube.com/watch?v=PRw6Qod9oG8):
Thursday, October 9, 2008
My Article in the ASCEND Newsletter and Other News
I am very happy to announce that "Miss Peach Strikes Out," the article I wrote for the ASCEND Fall 2008 newsletter, has finally been published! I received several copies of it in the mail courtesy of Deirdre Wright, the founder of ASCEND, whom I met at COSAC's annual conference in Atlantic City this past May.
So, without further ado, I am proud to present my article, "Miss Peach Strikes Out," and a sidebar that I also wrote, "The Naughty Autie's Top Five Dating Tips for Girls with Asperger's Syndrome," both of which are featured in the Fall 2008 of the ASCEND Newsletter.
Cover (my article title is circled in red):
Centerfold!
Page One:
Page Two:
~*~
In other news, I am also excited to announce that another article I wrote, "I Can Cook, I Can Write: Prenatal Testing, Asperger's Syndrome, and the Journey to Existence," has been accepted for publication in the February '09 issue of Autism Spectrum Quarterly magazine! I am also being interviewed by Liane Holliday Wiley in the "C.E.O.: Celebrating Excellence and Originality" column for the November '08 issue, as a lead-in piece. So I will post links to the articles here as they become available. Don't forget to look for the hard copy issues on newsstands, too!
In terms of public speaking engagements, I have several events that are occurring this month. On October 19th, I will be performing a reading at Herstory's 12th Anniversary Gala Luncheon at the Charles B. Wang Center at Stony Brook University in Stony Brook, NY. On October 26th, I am facilitating a workshop for parents of children on the spectrum at the Special Day for Special Kids event at the West Hills Day Camp in Huntington, NY. Finally, I am scheduled to speak at two social skills group meetings at the JCC in Manhattan; one on October 21st, the other on November 4th. I'll also be co-chairing, along with my business manager and friend Nicole Turon-Diaz, a vendor table at Kean University's "Autism: Putting the Pieces Together" conference on November 21st. There is also the potential that I may be speaking at the conference. I'll be sure to let you all know how that pans out.
This bears little repeating, but, I (obviously) have quite a busy schedule ahead of me these next few months. I'm also going through a bit of personal turmoil at the moment, trying to find a new apartment in which to live with my friend Dan, as my current situation is coming to a close and I'll need to move out of here soon. Sigh. So much to do, so little time. I'll see you folks at the next bend in the road.
So, without further ado, I am proud to present my article, "Miss Peach Strikes Out," and a sidebar that I also wrote, "The Naughty Autie's Top Five Dating Tips for Girls with Asperger's Syndrome," both of which are featured in the Fall 2008 of the ASCEND Newsletter.
Centerfold!
Page One:
Page Two:
~*~
In other news, I am also excited to announce that another article I wrote, "I Can Cook, I Can Write: Prenatal Testing, Asperger's Syndrome, and the Journey to Existence," has been accepted for publication in the February '09 issue of Autism Spectrum Quarterly magazine! I am also being interviewed by Liane Holliday Wiley in the "C.E.O.: Celebrating Excellence and Originality" column for the November '08 issue, as a lead-in piece. So I will post links to the articles here as they become available. Don't forget to look for the hard copy issues on newsstands, too!
In terms of public speaking engagements, I have several events that are occurring this month. On October 19th, I will be performing a reading at Herstory's 12th Anniversary Gala Luncheon at the Charles B. Wang Center at Stony Brook University in Stony Brook, NY. On October 26th, I am facilitating a workshop for parents of children on the spectrum at the Special Day for Special Kids event at the West Hills Day Camp in Huntington, NY. Finally, I am scheduled to speak at two social skills group meetings at the JCC in Manhattan; one on October 21st, the other on November 4th. I'll also be co-chairing, along with my business manager and friend Nicole Turon-Diaz, a vendor table at Kean University's "Autism: Putting the Pieces Together" conference on November 21st. There is also the potential that I may be speaking at the conference. I'll be sure to let you all know how that pans out.
This bears little repeating, but, I (obviously) have quite a busy schedule ahead of me these next few months. I'm also going through a bit of personal turmoil at the moment, trying to find a new apartment in which to live with my friend Dan, as my current situation is coming to a close and I'll need to move out of here soon. Sigh. So much to do, so little time. I'll see you folks at the next bend in the road.
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