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:
Wednesday, November 4, 2009
Thursday, September 17, 2009
My Day In Court: Testifying in Favor of an Autism Insurance Bill
I would like to apologize to all of you. I meant to write about this months ago, but it seems that time got away from me. Better late than never, though, right?
On May 14th, 2009, just days before I began my first class of the summer, something downright remarkable happened. I received an e-mail from Leslie Long, who works for Autism New Jersey, an autism advocacy organization here in NJ. She told me that there was an Autism Insurance Bill (A2238) up for approval in the New Jersey State Assembly Appropriations Committee and Senate. The purpose of the bill was to have insurance companies pay for medically necessary evidence-based treatments for autism (such as ABA) and other related services that most families pay for out-of-pocket right now, and many have even gone bankrupt because of trying to pay for these services (many of which can cost upward of $50,000 a year). The hearings were to take place the following Monday, the 18th of May, and she wanted to know if I would be willing to testify in favor of it!
This, of course, seemed like a very worthy endeavor to me, even though the bill only covered individuals aged 21 and under. So, I agreed to testify. Dan (my roommate) and I got up bright and early that Monday morning, and together we drove down to Ewing, a town right next to Trenton, which was where the state annex was located. I left my car at Autism New Jersey's headquarters, and the two of us, along with Barbara Wells (who also works for ANJ) headed to Trenton in Barbara's car.
I was struck by the atmosphere as I walked into the courthouse, signing my name in the guestbook and affixing a temporary "Visitor" badge to my lapel. More members of our group began to filter in--whom I recognized immediately because we were all dressed in varying shades of red, the chosen color for the cause and ANJ--and we stood outside the Senate hearing room chatting and mingling. One woman from Autism Speaks was handing out "Vote YES on A2238" buttons for people to wear, and both Dan and I took one and proudly pinned them to our jackets.
A few more minutes passed, and after Leslie Long couldn't get ahold of an unavailable senator to whom she had wanted to introduce me, we all went up to the Assembly Appropriations Committee hearing room. The doors to the room were the first thing that I noticed--they were tall, black, and heavy, and somewhat resembled the doors to the kitchen in the movie Ratatouille. The red patterned carpet also caught my attention, so bright and busy that it was like being inside a casino. I made my way up to the front row, along with Suzanne Buchanan, with whom I would be testifying.
When Leslie contacted me, the first thing I asked was, "What should I say?" After all, nothing would be more valuable than the words I chose for my testimony, and whatever I said needed to be concise, as there would be only a brief time for me to speak. I remembered my Letter to My Younger Self, and I decided that that would be the perfect thing to read as my testimony. I sent it to Leslie, as I was sure we would need to modify or abridge it somehow due to the time constraints. She read it aloud as we were on the phone, and said to me, "You know what? I can't think of a thing to change. Leave it just as it is."
So, I did, and only shortened the introduction that I'd written to the letter. I sat there in that courtroom, clutching it in my hand, and was so nervous, unsure as to whether it would win the Assembly over. I felt especially anxious as I cast a glance over at Suzanne's testimony, all neatly spaced and professional-looking on a crisp page of paper bearing the Autism New Jersey logo and letterhead. I crossed my fingers, hoping that I would be taken seriously, even though I didn't have custom stationery or the credibility that comes with it.
Another bill went up for debate first, just to bide time until everyone related to the A2238 bill had arrived. The first person to testify was Bob Wright, co-founder of Autism Speaks. The Speaker of the Assembly, Joseph Roberts, had asked Mr. Wright there to deliver testimony of his own, based on his experiences with his grandson. After him was Assemblywoman Joan Voss, who has an adult son with Asperger's syndrome. Ironically, I am a member of the Asperger's Syndrome Advisory Board for the Daniel Jordan Fiddle (DJF) Foundation, and her son is also on the board.
After Assemblywoman Voss finished speaking, Suzanne and I were up. Suzanne went first, and I listened carefully as she recited her prepared speech. Once she was done, the Chairwoman asked if I had anything to add. Her phrasing momentarily gave me pause, as it sounded like I was merely meant to be a follow-up to Suzanne's testimony, rather than giving my own separately. I disregarded the thought, however, and began to read my Letter.
I did not realize this at the time, as I was intently focused on quickly reading the letter, but Dan later told me that the room was completely quiet when I read. When others had given testimony, people were still talking--assistants to the committee members were walking back and forth from the table, things like that. But there was not a word spoken by any of them as I read. Dan also said that he saw people crying softly during my testimony, so moved were they by my words that it brought them to tears. I was floored when he told me all of this, amazed but in a very happy way.
The one distinct memory that I do have, however, is when the Chairwoman interrupted me about three-quarters of the way through the letter, saying that testimonies needed to be short due to time constraints and that, while she appreciated what I had to say quite a lot, that (more or less) I needed to hurry up and finish. So, I skipped one paragraph in the letter, which enabled me to reach the end more quickly.
I made my way back to my seat afterwards, and several people turned to me, their hushed voices warmly saying how much they'd enjoyed what I said. To my surprise, the Assembly voted on the bill right then and there! They went around the table asking each assemblyperson for his or her vote ('yes' or 'no'). When one woman gave her vote, she stopped to say, "And I'd just like to say to Amy, thank you so much for what you said. Your letter was beautiful." I got a personal shout-out during the vote, which was completely unexpected, but so nice.
Once the votes were tallied, we were all thrilled to discover that the bill had passed! Victory was ours! What a feeling indeed. We all hugged and embraced one another, delighted and relieved that all of our hard work had paid off.
It was, however, a somewhat bittersweet moment for me, because I knew in the back of my mind that this battle is far from over. Adults with autism and autism spectrum disorders still don't have insurance coverage--even if they did, there really aren't any services for the insurance to cover in the first place. I am proud to have been a part of this moment in history, to have contributed in the way that I did, but I know what lies ahead, and I hope that we adults will have just as many people fighting on our side as the children did.
I often feel as though many government offices and social services departments seem to think that autism and Asperger's syndrome are "childhood disorders." As if these individuals will somehow magically grow out of autism when they turn 18. But we all know that this is not the case. The fact of the matter is, autistic children are one day going to become autistic adults, and what will happen to them then? Many end up in group residences, or live at home with aging parents who will one day not be able to take care of them. Something has to be done about this.
What will the government do when millions of autistic children turn 18? Act as if they don't exist? The one true kernel of wisdom in passing this bill is that it seems as if people are starting to realize that it is better and far more sensible to pay for services now, so that these individuals can grow up to be productive, contributing members of society, than to wait until they are adults and pay then...pay for them to stay at home, without jobs, without anything, draining away their family's money.
This, of course, does not do much to help the adults who are here right now, who are struggling to find and maintain employment, to make and keep friends and develop romantic relationships. I have found myself become a voice for adults on the spectrum, especially now that I am starting my Master's thesis, in which I have to design and run a study using the principles of applied behavior analysis to teach a skill.
I think about adults on the spectrum all the time, about all the challenges they (we!) are facing, and what I can do to make things better. Testifying in favor of this bill was one step in that direction. I know that if I continue my work, write my book, (eventually) become a college coach for individuals with Asperger's syndrome, those will all be big steps in that very same direction. Having been a part of this democratic process and seeing it in action has inspired me to keep up that good fight. And I hope you all will, too.
On May 14th, 2009, just days before I began my first class of the summer, something downright remarkable happened. I received an e-mail from Leslie Long, who works for Autism New Jersey, an autism advocacy organization here in NJ. She told me that there was an Autism Insurance Bill (A2238) up for approval in the New Jersey State Assembly Appropriations Committee and Senate. The purpose of the bill was to have insurance companies pay for medically necessary evidence-based treatments for autism (such as ABA) and other related services that most families pay for out-of-pocket right now, and many have even gone bankrupt because of trying to pay for these services (many of which can cost upward of $50,000 a year). The hearings were to take place the following Monday, the 18th of May, and she wanted to know if I would be willing to testify in favor of it!
This, of course, seemed like a very worthy endeavor to me, even though the bill only covered individuals aged 21 and under. So, I agreed to testify. Dan (my roommate) and I got up bright and early that Monday morning, and together we drove down to Ewing, a town right next to Trenton, which was where the state annex was located. I left my car at Autism New Jersey's headquarters, and the two of us, along with Barbara Wells (who also works for ANJ) headed to Trenton in Barbara's car.
I was struck by the atmosphere as I walked into the courthouse, signing my name in the guestbook and affixing a temporary "Visitor" badge to my lapel. More members of our group began to filter in--whom I recognized immediately because we were all dressed in varying shades of red, the chosen color for the cause and ANJ--and we stood outside the Senate hearing room chatting and mingling. One woman from Autism Speaks was handing out "Vote YES on A2238" buttons for people to wear, and both Dan and I took one and proudly pinned them to our jackets.
A few more minutes passed, and after Leslie Long couldn't get ahold of an unavailable senator to whom she had wanted to introduce me, we all went up to the Assembly Appropriations Committee hearing room. The doors to the room were the first thing that I noticed--they were tall, black, and heavy, and somewhat resembled the doors to the kitchen in the movie Ratatouille. The red patterned carpet also caught my attention, so bright and busy that it was like being inside a casino. I made my way up to the front row, along with Suzanne Buchanan, with whom I would be testifying.
When Leslie contacted me, the first thing I asked was, "What should I say?" After all, nothing would be more valuable than the words I chose for my testimony, and whatever I said needed to be concise, as there would be only a brief time for me to speak. I remembered my Letter to My Younger Self, and I decided that that would be the perfect thing to read as my testimony. I sent it to Leslie, as I was sure we would need to modify or abridge it somehow due to the time constraints. She read it aloud as we were on the phone, and said to me, "You know what? I can't think of a thing to change. Leave it just as it is."
So, I did, and only shortened the introduction that I'd written to the letter. I sat there in that courtroom, clutching it in my hand, and was so nervous, unsure as to whether it would win the Assembly over. I felt especially anxious as I cast a glance over at Suzanne's testimony, all neatly spaced and professional-looking on a crisp page of paper bearing the Autism New Jersey logo and letterhead. I crossed my fingers, hoping that I would be taken seriously, even though I didn't have custom stationery or the credibility that comes with it.
Another bill went up for debate first, just to bide time until everyone related to the A2238 bill had arrived. The first person to testify was Bob Wright, co-founder of Autism Speaks. The Speaker of the Assembly, Joseph Roberts, had asked Mr. Wright there to deliver testimony of his own, based on his experiences with his grandson. After him was Assemblywoman Joan Voss, who has an adult son with Asperger's syndrome. Ironically, I am a member of the Asperger's Syndrome Advisory Board for the Daniel Jordan Fiddle (DJF) Foundation, and her son is also on the board.
After Assemblywoman Voss finished speaking, Suzanne and I were up. Suzanne went first, and I listened carefully as she recited her prepared speech. Once she was done, the Chairwoman asked if I had anything to add. Her phrasing momentarily gave me pause, as it sounded like I was merely meant to be a follow-up to Suzanne's testimony, rather than giving my own separately. I disregarded the thought, however, and began to read my Letter.
I did not realize this at the time, as I was intently focused on quickly reading the letter, but Dan later told me that the room was completely quiet when I read. When others had given testimony, people were still talking--assistants to the committee members were walking back and forth from the table, things like that. But there was not a word spoken by any of them as I read. Dan also said that he saw people crying softly during my testimony, so moved were they by my words that it brought them to tears. I was floored when he told me all of this, amazed but in a very happy way.
The one distinct memory that I do have, however, is when the Chairwoman interrupted me about three-quarters of the way through the letter, saying that testimonies needed to be short due to time constraints and that, while she appreciated what I had to say quite a lot, that (more or less) I needed to hurry up and finish. So, I skipped one paragraph in the letter, which enabled me to reach the end more quickly.
I made my way back to my seat afterwards, and several people turned to me, their hushed voices warmly saying how much they'd enjoyed what I said. To my surprise, the Assembly voted on the bill right then and there! They went around the table asking each assemblyperson for his or her vote ('yes' or 'no'). When one woman gave her vote, she stopped to say, "And I'd just like to say to Amy, thank you so much for what you said. Your letter was beautiful." I got a personal shout-out during the vote, which was completely unexpected, but so nice.
Once the votes were tallied, we were all thrilled to discover that the bill had passed! Victory was ours! What a feeling indeed. We all hugged and embraced one another, delighted and relieved that all of our hard work had paid off.
It was, however, a somewhat bittersweet moment for me, because I knew in the back of my mind that this battle is far from over. Adults with autism and autism spectrum disorders still don't have insurance coverage--even if they did, there really aren't any services for the insurance to cover in the first place. I am proud to have been a part of this moment in history, to have contributed in the way that I did, but I know what lies ahead, and I hope that we adults will have just as many people fighting on our side as the children did.
I often feel as though many government offices and social services departments seem to think that autism and Asperger's syndrome are "childhood disorders." As if these individuals will somehow magically grow out of autism when they turn 18. But we all know that this is not the case. The fact of the matter is, autistic children are one day going to become autistic adults, and what will happen to them then? Many end up in group residences, or live at home with aging parents who will one day not be able to take care of them. Something has to be done about this.
What will the government do when millions of autistic children turn 18? Act as if they don't exist? The one true kernel of wisdom in passing this bill is that it seems as if people are starting to realize that it is better and far more sensible to pay for services now, so that these individuals can grow up to be productive, contributing members of society, than to wait until they are adults and pay then...pay for them to stay at home, without jobs, without anything, draining away their family's money.
This, of course, does not do much to help the adults who are here right now, who are struggling to find and maintain employment, to make and keep friends and develop romantic relationships. I have found myself become a voice for adults on the spectrum, especially now that I am starting my Master's thesis, in which I have to design and run a study using the principles of applied behavior analysis to teach a skill.
I think about adults on the spectrum all the time, about all the challenges they (we!) are facing, and what I can do to make things better. Testifying in favor of this bill was one step in that direction. I know that if I continue my work, write my book, (eventually) become a college coach for individuals with Asperger's syndrome, those will all be big steps in that very same direction. Having been a part of this democratic process and seeing it in action has inspired me to keep up that good fight. And I hope you all will, too.
Thursday, August 27, 2009
Searching for Eve: A Review of the movie "Adam"
**WARNING: This review may contain slight spoilers. Read at your own discretion.
After months of build-up and tons of people asking me if I'd seen this movie, today I finally saw Adam, starring Hugh Dancy and Rose Byrne. I'm sure most everyone already knows the story, but it's about the life of a young man named Adam Raki who has Asperger's syndrome, and Beth Buchwald, the woman with whom he falls in love and has a relationship.
One thing that I had forearmed myself with as I went in to the film was not to get my hopes up about strongly "identifying" with the character of Adam. I belong to the listserv for GRASP, the Global and Regional Asperger Syndrome Partnership, and several people on the list have posted about seeing the movie and their feelings on it. The thing is, with maybe one exception, these people are all men. I knew today that what I was going to see was a depiction of the male version of Asperger's. Although there were several moments that resonated with me, as I expected, I did not completely identify with Adam.
That is not to say that the portrayal of a person with Asperger's syndrome was unfaithful or miscalculated. It was realistic, and it did capture some of the frustrations and pain I have experienced in my own life. But, again, this was still being told through a uniquely "male" lens. Now, it does make sense that a mainstream film (or almost mainstream, because I did see this at an art house theatre) featuring a titular character with Asperger's syndrome would be a man, because more males than females are diagnosed with the disorder. However, this does not mean that women on the spectrum aren't out there. They are, although many are misdiagnosed or not diagnosed at all, and I have hope that one day their stories will be told, too.
There was one scene in Adam that particularly struck me, which is where Adam discovers that Beth has lied to him about the circumstances surrounding his meeting her parents (he thought they ran into them coincidentally at a theatre for an off-Broadway show, but it was actually preplanned). Adam flew into a rage at this, calling Beth a "liar" and throwing things around the room. For one thing, I understand why he became so agitated--he thought Beth lying to him meant that she was pulling away from him and didn't care about him.
On the other, this was another "male" Aspie moment. The tantrum itself was a pure outburst--his emotions didn't even have time to flow through his body, they just came flying out at 100 miles per hour. I have had meltdowns in my life, but for me, what's happened is that the emotions have filled me completely and overwhelmed me to the point where they spilled out of me. Neither were my meltdowns directed at other people, as Adam's was (Beth later states that she was afraid he was going to hit her). The anger or frustration I felt in my younger years was directed mostly at myself, and I wouldn't have dreamed of hurting someone, and if it did happen (albeit unintentionally), I would be wracked with guilt.
This also speaks to the dichotomy of "male" versus "female" gender roles in society. For men, it's more permissible to have a "temper," to express rage in an outward fashion like that. Women, by contrast, are taught to contain their emotions, to behave and repress and act "ladylike." We see Adam throw this fit and feel sympathy for him; yet, I feel that if it were a woman acting similarly, the primary thought emanating from the audience would be, "What a crazy bitch!", and no sympathy would be given whatsoever.
The other issue concerning gender roles again comes from the onscreen individual with Asperger's being a male, and the love interest being a neurotypical (NT) female. Beth steps into Adam's world, reads the book "Pretending to be Normal" to learn more about AS, drills him to help him prepare for a job interview. Simply put, the idea put forward is that because she's a woman, it's "expected" that she would do these things for him. It may be a challenge at times and rather difficult, but it's never mentioned that there's any other possible route for her to take (i.e., not reading books, not making accommodations, expecting him to fit into her world). She, instead, takes measures to fit into his world.
Now, speaking from firsthand experience, I can tell you that I have yet to find an NT male who would do any of these things. I'm not saying that they're not out there, but I don't think there's any way a purely NT male would make these sort of accommodations for an Aspie female. In our society, women are supposed to be "nurturers," the "carers"...protecting and providing for everyone else. A man can be damaged or screwed up in all sorts of ways, yet all it takes is a woman to come along and "complete" him, to repair him. I do not think women have this luxury, but rather seem required to be put together, stable, and calm at all times. To put it bluntly: if I had a tantrum or meltdown like Adam did in the movie, the NT guy I was seeing or hoping to see would be out the door in seconds flat.
Again, I don't mean to seem like I'm not giving NT guys any credit. Heck, I currently live with one, and he's helped me in ways I can't even describe. But when it comes to a relationship, that's a whole other basket of eggs. Longevity is just not in the cards for a person like me. Indeed, in the movie, Adam and Beth do not end up together, which is representative of the romantic foibles of most real-life Aspies. But the fact that they courted and began dating so quickly also seems to be an anomaly. I know that this is part of the magic of the movies, but the fact is that Adam's "quirks" and "idiosyncrasies" were very endearing to Beth, and sadly this is not representative of real life. I myself have learned the hard way that certain qualities of my personality annoy or irritate more people than they enchant.
The other large issue that I felt was distorted was Adam's search for a job. When the movie starts, he has a job, but is soon fired due to a lack of productivity. He sends out something like 80 resumes or cover letters, and in what seems like no time at all, he hears from a company that doesn't think he's right for the job for which he applied, but they "have one that they think [he'd] be perfect for."
Employment is a huge struggle for people with Asperger's--both obtaining and keeping jobs. Upon Adam's termination, I felt the very same sting that I could tell he was feeling, numb and disoriented as he stumbled out of his office. His former co-workers attempted to offer sympathy, but he was too aggrieved to be receptive to such condolences. When he stepped outside, everything seemed louder, more jarring, moving him ever-closer to being totally overwhelmed. I experienced something quite similar when I was fired from my temp jobs in Seattle. They weren't even real jobs, like Adam's, but my heart was shattered when I was told to pack up and leave, and I remember just looking down at the floor as I made my way to the elevator, ashamed and upset.
But for Adam to bounce back so readily is, unfortunately, very atypical. The fact that he found a job through sending out online applications is also improbable, as many folks with AS go through organizations that look for employment for people with disabilities, or utilize other assistive services. The success rate of these is often low, and is even worse when these individuals look for jobs on their own. So, while I understand that the focus of this film was to be a romantic comedy, I do wish it would have delved more into the employment aspect. I was also confused by the fact that Adam became terribly agitated when a character suggested that he move out of his apartment, yet he seemed to readily embrace the idea of moving across the country to California for a job.The film was attempting to portray the difficulty with change and changes in routine that many individuals with AS have, so throwing in that latter plot point was one heck of a contradiction (to me, anyway).
So I'm sure you're all wondering, "All right, Amy, enough. Just tell me straight: Is Adam worth seeing?" My answer is yes. It does provide an NT viewer with a better understanding of Asperger's syndrome. For the Aspie viewer, it provides a fresh opportunity to identify with a character (which may have been much more of a challenge with the film Mozart and the Whale, which was based on the book of the same name and the lives of two real Aspies, Jerry and Mary Newport). Adam is truly a unique character, and it's much more possible for someone with Asperger's to say "Hey, that's like me!" because there are no preconceptions with which to contend.
Many AS folks may feel like Adam is showing or telling them things that they already know, but even I can't deny that I got a serious lump in my throat the first time the words "Asperger's syndrome" were uttered onscreen. In my entire life, I have never seen a character in a movie that I thought was really at all like me, and so this was a monumental step forward, both for cinema and for people with Asperger's syndrome everywhere. But I still hope to see a story from the female perspective make it to the silver screen one day, because it is the yin to this yang, the other side of this rare coin that we've finally been privileged to see. And it deserves a chance to shine.
After months of build-up and tons of people asking me if I'd seen this movie, today I finally saw Adam, starring Hugh Dancy and Rose Byrne. I'm sure most everyone already knows the story, but it's about the life of a young man named Adam Raki who has Asperger's syndrome, and Beth Buchwald, the woman with whom he falls in love and has a relationship.
One thing that I had forearmed myself with as I went in to the film was not to get my hopes up about strongly "identifying" with the character of Adam. I belong to the listserv for GRASP, the Global and Regional Asperger Syndrome Partnership, and several people on the list have posted about seeing the movie and their feelings on it. The thing is, with maybe one exception, these people are all men. I knew today that what I was going to see was a depiction of the male version of Asperger's. Although there were several moments that resonated with me, as I expected, I did not completely identify with Adam.
That is not to say that the portrayal of a person with Asperger's syndrome was unfaithful or miscalculated. It was realistic, and it did capture some of the frustrations and pain I have experienced in my own life. But, again, this was still being told through a uniquely "male" lens. Now, it does make sense that a mainstream film (or almost mainstream, because I did see this at an art house theatre) featuring a titular character with Asperger's syndrome would be a man, because more males than females are diagnosed with the disorder. However, this does not mean that women on the spectrum aren't out there. They are, although many are misdiagnosed or not diagnosed at all, and I have hope that one day their stories will be told, too.
There was one scene in Adam that particularly struck me, which is where Adam discovers that Beth has lied to him about the circumstances surrounding his meeting her parents (he thought they ran into them coincidentally at a theatre for an off-Broadway show, but it was actually preplanned). Adam flew into a rage at this, calling Beth a "liar" and throwing things around the room. For one thing, I understand why he became so agitated--he thought Beth lying to him meant that she was pulling away from him and didn't care about him.
On the other, this was another "male" Aspie moment. The tantrum itself was a pure outburst--his emotions didn't even have time to flow through his body, they just came flying out at 100 miles per hour. I have had meltdowns in my life, but for me, what's happened is that the emotions have filled me completely and overwhelmed me to the point where they spilled out of me. Neither were my meltdowns directed at other people, as Adam's was (Beth later states that she was afraid he was going to hit her). The anger or frustration I felt in my younger years was directed mostly at myself, and I wouldn't have dreamed of hurting someone, and if it did happen (albeit unintentionally), I would be wracked with guilt.
This also speaks to the dichotomy of "male" versus "female" gender roles in society. For men, it's more permissible to have a "temper," to express rage in an outward fashion like that. Women, by contrast, are taught to contain their emotions, to behave and repress and act "ladylike." We see Adam throw this fit and feel sympathy for him; yet, I feel that if it were a woman acting similarly, the primary thought emanating from the audience would be, "What a crazy bitch!", and no sympathy would be given whatsoever.
The other issue concerning gender roles again comes from the onscreen individual with Asperger's being a male, and the love interest being a neurotypical (NT) female. Beth steps into Adam's world, reads the book "Pretending to be Normal" to learn more about AS, drills him to help him prepare for a job interview. Simply put, the idea put forward is that because she's a woman, it's "expected" that she would do these things for him. It may be a challenge at times and rather difficult, but it's never mentioned that there's any other possible route for her to take (i.e., not reading books, not making accommodations, expecting him to fit into her world). She, instead, takes measures to fit into his world.
Now, speaking from firsthand experience, I can tell you that I have yet to find an NT male who would do any of these things. I'm not saying that they're not out there, but I don't think there's any way a purely NT male would make these sort of accommodations for an Aspie female. In our society, women are supposed to be "nurturers," the "carers"...protecting and providing for everyone else. A man can be damaged or screwed up in all sorts of ways, yet all it takes is a woman to come along and "complete" him, to repair him. I do not think women have this luxury, but rather seem required to be put together, stable, and calm at all times. To put it bluntly: if I had a tantrum or meltdown like Adam did in the movie, the NT guy I was seeing or hoping to see would be out the door in seconds flat.
Again, I don't mean to seem like I'm not giving NT guys any credit. Heck, I currently live with one, and he's helped me in ways I can't even describe. But when it comes to a relationship, that's a whole other basket of eggs. Longevity is just not in the cards for a person like me. Indeed, in the movie, Adam and Beth do not end up together, which is representative of the romantic foibles of most real-life Aspies. But the fact that they courted and began dating so quickly also seems to be an anomaly. I know that this is part of the magic of the movies, but the fact is that Adam's "quirks" and "idiosyncrasies" were very endearing to Beth, and sadly this is not representative of real life. I myself have learned the hard way that certain qualities of my personality annoy or irritate more people than they enchant.
The other large issue that I felt was distorted was Adam's search for a job. When the movie starts, he has a job, but is soon fired due to a lack of productivity. He sends out something like 80 resumes or cover letters, and in what seems like no time at all, he hears from a company that doesn't think he's right for the job for which he applied, but they "have one that they think [he'd] be perfect for."
Employment is a huge struggle for people with Asperger's--both obtaining and keeping jobs. Upon Adam's termination, I felt the very same sting that I could tell he was feeling, numb and disoriented as he stumbled out of his office. His former co-workers attempted to offer sympathy, but he was too aggrieved to be receptive to such condolences. When he stepped outside, everything seemed louder, more jarring, moving him ever-closer to being totally overwhelmed. I experienced something quite similar when I was fired from my temp jobs in Seattle. They weren't even real jobs, like Adam's, but my heart was shattered when I was told to pack up and leave, and I remember just looking down at the floor as I made my way to the elevator, ashamed and upset.
But for Adam to bounce back so readily is, unfortunately, very atypical. The fact that he found a job through sending out online applications is also improbable, as many folks with AS go through organizations that look for employment for people with disabilities, or utilize other assistive services. The success rate of these is often low, and is even worse when these individuals look for jobs on their own. So, while I understand that the focus of this film was to be a romantic comedy, I do wish it would have delved more into the employment aspect. I was also confused by the fact that Adam became terribly agitated when a character suggested that he move out of his apartment, yet he seemed to readily embrace the idea of moving across the country to California for a job.The film was attempting to portray the difficulty with change and changes in routine that many individuals with AS have, so throwing in that latter plot point was one heck of a contradiction (to me, anyway).
So I'm sure you're all wondering, "All right, Amy, enough. Just tell me straight: Is Adam worth seeing?" My answer is yes. It does provide an NT viewer with a better understanding of Asperger's syndrome. For the Aspie viewer, it provides a fresh opportunity to identify with a character (which may have been much more of a challenge with the film Mozart and the Whale, which was based on the book of the same name and the lives of two real Aspies, Jerry and Mary Newport). Adam is truly a unique character, and it's much more possible for someone with Asperger's to say "Hey, that's like me!" because there are no preconceptions with which to contend.
Many AS folks may feel like Adam is showing or telling them things that they already know, but even I can't deny that I got a serious lump in my throat the first time the words "Asperger's syndrome" were uttered onscreen. In my entire life, I have never seen a character in a movie that I thought was really at all like me, and so this was a monumental step forward, both for cinema and for people with Asperger's syndrome everywhere. But I still hope to see a story from the female perspective make it to the silver screen one day, because it is the yin to this yang, the other side of this rare coin that we've finally been privileged to see. And it deserves a chance to shine.
Monday, August 10, 2009
The last few months
I can't believe I haven't updated since May! My goodness. Quite a few things have happened since then, and I feel terrible for not keeping you all abreast of the latest developments.
This entry is actually more of a housekeeping one, though right now I am working on an entry all about me testifying in the New Jersey State Assembly back in May, in favor of an autism insurance bill. I will have that up as soon as time allows, but for right now, I want to make a declaration.
After seeing the movie Julie & Julia today, I realize the importance of regular blogging. I got an e-mail the other day with a link to an article about a 14-year-old nonverbal girl with autism named Taryn, who had started typing on her parents' computer one day, revealing all of her inner thoughts and feelings. The article said that she'd found her "inner voice," and the person who e-mailed it to me, while anonymous, left a note that said, "We, your fans, are glad you found your inner voice, too. :-)"
That message just about made my day, for a multitude of reasons. I never realized before that I have fans, people who may possibly read this blog on a regular basis. If this is the case, then I have been letting you all down terribly by not updating in so long. No more! I had always thought that I couldn't write an entry unless I had something big and important to write about, but I can write about anything. The day-to-day goings-on in my life are pretty interesting, especially since I'm about to start on my Master's thesis this fall (if you can believe it!).
So this is my pledge to you, dear readers: no more lengthy gaps and spaces of time between entries. From now on, you will be seeing a lot more entries from me. I fear they may tend towards the mundane, but if you all are willing to read them (and maybe comment?), then I am willing to write them. This is my promise. And I will do all that I can to fulfill it. So, stay tuned for an entry about my testimony to the NJ State Assembly, and many other entries to come!
This entry is actually more of a housekeeping one, though right now I am working on an entry all about me testifying in the New Jersey State Assembly back in May, in favor of an autism insurance bill. I will have that up as soon as time allows, but for right now, I want to make a declaration.
After seeing the movie Julie & Julia today, I realize the importance of regular blogging. I got an e-mail the other day with a link to an article about a 14-year-old nonverbal girl with autism named Taryn, who had started typing on her parents' computer one day, revealing all of her inner thoughts and feelings. The article said that she'd found her "inner voice," and the person who e-mailed it to me, while anonymous, left a note that said, "We, your fans, are glad you found your inner voice, too. :-)"
That message just about made my day, for a multitude of reasons. I never realized before that I have fans, people who may possibly read this blog on a regular basis. If this is the case, then I have been letting you all down terribly by not updating in so long. No more! I had always thought that I couldn't write an entry unless I had something big and important to write about, but I can write about anything. The day-to-day goings-on in my life are pretty interesting, especially since I'm about to start on my Master's thesis this fall (if you can believe it!).
So this is my pledge to you, dear readers: no more lengthy gaps and spaces of time between entries. From now on, you will be seeing a lot more entries from me. I fear they may tend towards the mundane, but if you all are willing to read them (and maybe comment?), then I am willing to write them. This is my promise. And I will do all that I can to fulfill it. So, stay tuned for an entry about my testimony to the NJ State Assembly, and many other entries to come!
Tuesday, May 5, 2009
So this is what an epiphany feels like...
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.
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.
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 and will 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.
But I have to be honest with you: 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 seventh and eighth 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 handle the pain 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. You can't understand what they're doing, and 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. Retard. 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, just in case you were wondering how that happened). 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 eighth 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. A lot 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 say to you now 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,
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 and will 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.
But I have to be honest with you: 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 seventh and eighth 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 handle the pain 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. You can't understand what they're doing, and 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. Retard. 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, just in case you were wondering how that happened). 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 eighth 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. A lot 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 say to you now 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,
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!
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