Tuesday, December 7, 2010

On Grief and the Death of Elizabeth Edwards

As I'm sure most folks have heard by now, Elizabeth Edwards--ex-wife of former presidential candidate John Edwards--has died, from terminal cancer. She had only just decided to stop receiving treatment--on the advice of her doctors, who informed her that the cancer had spread to her bones. Not a day later, she was gone.

I can only imagine the sadness her loved ones must be feeling during this time. Everything that she went through, from the cancer diagnosis to her husband's infidelity and fathering an illegitimate child, no doubt took a great toll on her. From every story I have read, it seems she carried herself with dignity, grace, and comportment, despite having to experience all of this under the intense scrutiny of the public eye.

And now, this terrible disease, which went into remission once before, returned to ravage her body further. If nothing else, I am sure her family feels a sense of relief that she has been released from her pain.

But this does not change the fact that she is gone, and that her passing comes at one of the most difficult times of the year: the holidays.

I have some experience in this area, as it were.

In 2001, my one grandpa died four days before Christmas. I was home from my freshman year of college on winter break. My grandma called to tell me, and I felt my heart sink to my knees and my hands grow cold around the receiver as I said goodbye to her. What I did next was one of the hardest things I've ever had to do. I was the only one home, and I called my mother at school, where she was teaching. The secretary in the main office answered and informed me that my mom was in class.

"It's an emergency," I said softly, and told her the news. She did not hesitate to page my mom after that. The air seemed to still when she came on the phone a few minutes later, and then I heard myself tell my mom that her father had died.

My other grandpa died on Thanksgiving in 2003. My parents and I were standing in my aunt's house when my father got a call on his cell phone. He was perfectly calm as he told us, and we left immediately, heading up to his cousin Karim's house, where his side of the family would be.

Nobody spoke as we waited for my great-aunt Lollie and my Aunt Nancy to get there. I remember them walking into the kitchen--my great-aunt in a white sweatshirt with the word "Florida" emblazoned on the front, her straw-like hair freshly dyed and hairsprayed to unprecedented stiffness on top of her head, and the long bags under her eyes, set with wrinkles and stained with dried tears.

She hardly said a word--unheard of, for her--and was followed in by my Aunt Nancy. Her voice was choked as she greeted each of us, the gold Syrian bracelets on her wrist jingling as her hands shook. "He looked like he was just taking a nap!" she sobbed. I cast my eyes to the ground, ignoring the now-fetid smell of the turkey still cooking in the oven.

Last year, my great-uncle Sammy died on Christmas Eve. And though the loss was not as powerful as the previous two, I saw my other cousins swept in a tide of their own sorrow, and I grieved with them for their "giddo" (Arabic word for "grandpa").

I remember the wake. The beautiful stained glass in St. Ann's, a Byzantine Catholic church, and the colorful icons painted across the domed ceiling. I felt the blue carpet beneath my feet, and the cold from the doors opening and closing.

And Kathy, sister of my dad's previously mentioned cousin, Karim. She had been taking care of my great-uncle (her father) for the previous several months. I could see relief in her face, mixed in with the overwhelming grief. I wanted to say something to her, offer a word of comfort, for what little it might have meant. So I took her hand and said:

"I'm sorry. I know right now you're feeling like Christmas will never be the same again. The truth is, it does change your holiday forever--at first, you mourn and grieve, as is natural. But as time goes on, you start to celebrate--to incorporate the things that person stood for into your celebration. Instead of dwelling on what their death took away from the holiday, you remember all that they gave to it, all of the good that came from their presence and how much it meant. How part of them is still there, even after death, and always will be, just as long as you remember."

As I stood in the post office today, attempting to stave off the stress of a long line and only one clerk behind the desk, I thought of this. Of Christmases gone by, Christmases spent with my grandparents. I can still smell my grandmother's cooking in the kitchen, still see their tree festooned with blue-and-yellow ribbons, white twinkling lights, and numerous ornaments.

Christmas is not the same now, not as it was then, nor will it ever be--but it's inside of me. I'll be damned if I can remember a single present I ever got from my grandparents, but that love is something I will never forget. It is my great hope that in time, Kathy and my cousins and the family of Elizabeth Edwards will find their grief lessened, and that good memories will take its place, trading the cold in for the warmth.

Friday, December 3, 2010

In the Event of An Emergency

I recently became aware of a news story out of Towson University, in Maryland. A student there was interning (student teaching) at Thomas Johnson Elementary School in Baltimore City, and she reported witnessing teachers verbally and physically abusing children with autism. The principal of the school immediately attempted to discredit her claims by saying that this student has Asperger's Syndrome and was "mentally deficient and probably lying," and her advisors at Towson questioned her story. The final nail in the coffin was the Dean of Education telling her to stop talking about the incident altogether (Click here to read the full story).

As a student in a Masters degree program in Applied Behavior Analysis, one of my requirements in my first year was to do classroom "observations" at partner schools here in New Jersey.

It was a crisp Fall morning in 2007. I drove down the Garden State Parkway somewhat nervously, having just gotten my license the month before. After signing in at the main office, I made my way through the beige-painted hallway, the walls periodically dotted with the students' brightly-colored artwork.

I sat in a blue chair, the hard plastic pressed against my thighs as I surveyed the self-contained classroom before me. Small wooden cubbies containing coats, knapsacks, and carefully packed lunch boxes lined the wall, and various toys and other objects lay scattered across the carpeted floor. Several pieces of chalk sat idly in a tray beneath the blackboard, and I resisted the urge to pick one up and smell it.

The children made noise, as children so often do, sometimes so shrill and loud that I had to hold my ears. I've never felt particularly at ease around children, but knowing that they were on the spectrum--knowing that I was once them, and in some ways, still am--gave me a small measure of comfort.

Yes, in case you didn't know: I have Asperger's Syndrome.

When I was applying for graduate school, the decision of disclosing the diagnosis was one I did not hesitate on. I stated it outright, both in my written application and during the in-person interview. I believed that it would be an asset, to have a firsthand perspective that I could add to class discussions and use to help my fellow classmates better understand the students with whom they work on a daily basis.

It took a great many years for me to see having Asperger's Syndrome in such a light. To view it as a positive, rather than a negative. And here I was, walking into this completely new environment, unwilling to disguise a diagnosis that had been such an integral part of my being accepted into that environment in the first place.

I was fortunate, yes, where so many others are not. When I imagine being treated as the young woman in this story was treated--her credibility tarnished, her good name dragged through the muck--I am pained beyond the description of words. I am stirred, furious, into an ardor of righteousness, because I know that if I had seen what she had seen, I also would have been moved to report it.

So why should what she says, or what I say, or what anyone else with Asperger's Syndrome say, be so harshly discredited? Indeed, the most laughable part of this entire debacle is the school's principal saying that because of this young woman's condition, she was "probably lying." There is a sad irony to an authority figure whose charges include students on the autism spectrum completely and utterly failing to understand one of the most frequent hallmarks of ASDs, which is the near inability to lie.

People on the autism spectrum are said to be extremely honest, sometimes even brutally so, and that lying is a social event in which they will not and/or cannot engage. For me, it was simply that I never saw any point in lying. I may not have always been so tactful when I was younger, but it was never because I intended to hurt anyone or meant any harm. I have learned how to frame my honesty in a proper context, but never have I diluted it.

I do not believe this young woman would do so, either, and in fact would be more moved to seek justice for the terrible treatment visited upon these students by the very people who are meant to be taking care of them. Because how close did she perhaps come to being one of them? How close did I come? And just as I had no one to speak for me, these children also have no one to speak for them.

Except her.

The school principal and the members of this young woman's department at Towson, by their actions, sought to silence her voice--and, in turn, silence the voices of these children. There can be no defending them, no rationalizing or logic-ing their deeds away.

How can we expect these children to value themselves if the adults around them are so clearly demonstrating that they do not value them? I spent too many years believing I was not a person worth loving, or having as a friend, as a student, a daughter. Too many years believing I was not a person at all, and that vicious trap is what awaits these kids and so many others if things do not begin to change.

This young woman is one of the voices of change, one that I hope will be able to speak up loudly and proudly, rising from the ashes of the two schools' disgraceful actions. I hope she does go on to become a special education teacher and give students with ASDs and other developmental disabilities the support and encouragement they need--the very same support the education department at Towson so astoundingly failed to show her during their gross mishandling of this entire matter.

For the hope of a better future for all: Stop the abuse, stop the cover-up, stop the deliberate spread of misinformation. Let the truth ring out.

Monday, November 15, 2010

Hair of the Dog

Every November, an event called NaNoWriMo takes place. It's where people challenge themselves to write a novel in exactly one month. I tried to do it last year (unsuccessfully), and though I'm not taking part this time around, (much as I would have liked to), I've been thinking a lot lately about a situation that occurred recently with an old friend of mine who stopped talking to me a few months ago.

I wanted to find some way of dealing with the situation, to sort through all of the emotions I've been feeling, so I decided to write about a particular memory I have of her. I have no idea if this is any good, but now I know I can write 850-ish words in an hour (that's how long it took me to write this), so I feel much more motivated to work on my book.

This piece is called Hair of the Dog.


"Come on, Charley!"

Her voice is sing-song, playful as she waves her hand. He pants happily, eyes bright and shining, chest heaving with eager breath, and trots over. I watch as she clips the green leash to his collar, readying him.

"Wanna go for a walk?"

He barks in the affirmative, tail wagging nonstop. The noise rings in my ears, but I stay calm, focused on the task at hand. I pull on my coat, following her copper ponytail out into the cool, autumn night.

Down the road, Charley does his business, and she lets him off the leash soon after. "So he can run around a little," she says, and I nod.

The lights from the baseball field behind her street cast a faint glow; beams of light slipping in between the thick trees. It's only steps to the high school from there, beige and black walls and doors that close with a thunderous click.

Charley's vibrating form appears under the streetlight then, thick, white curls turned to an unnatural orange. A rustling in the bushes catches his attention, and he's off, chasing the unlucky--and no doubt unhappy--neighborhood cat.

We shake our heads in disbelief, our collective laughter echoing down the street.


She calls him back soon after, and we head inside, clomping up the creaking steps and through the two doors into the foyer. The smell of dog hits me in the face almost immediately, and I wrinkle my nose in disgust.

I'm not a dog person.

It's always the barking, the piercing volume that vibrates inside my skull and leaves me trembling, overwhelmed. The yappy dogs are the worst, with their high-pitched yelps and jumping as if they have springs attached to their paws. The combination of the two is enough to send me running from the room.

She told me how dumb Charley was when I first met him. That he'd never hurt a fly. I remember the almost permanent grin he had on his face, teeth exposed, pink tongue hanging down as he stared at us. His fur reminds me of my mother's sweater--coarse and smooth, bristling underneath and between my fingers.

He's helped me be not afraid.

I walk behind her to the TV room, listening to the scritch-scratch of his feet on the hardwood floor. It had been the usual back-and-forth at the video store that night, trying to decide what to rent. We never agree on anything, until the very last moment, when some movie we'd missed catches both our attention.

"Are you okay with this one?"

"I am if you are."

"I'm good."

I watch the tape slide into the VCR, the television flickering as the FBI warning appeared on screen. She grabs the remote then--one of several on the ruddy wooden chest in front of us--and fast-forwards. Her legs are tucked under her, a bowl of popcorn curled in one hand and pressed against her sweatshirt-covered torso. My purchase from the store was a box of gummi bears, and I've already taken them out of the package and sorted them by color, discarding the oranges and yellows.

She's washed her makeup off, revealing the truth behind the facade. Erect, reddened pimples dot the landscape of her face, all connecting to form a picture of what is inside. I've watched her hide, standing in front of the mirror, concealing, pressing the brush with fevered strokes, again and again. I don't understand it.

To me, she is beautiful. She is my best friend, and she is beautiful. If I can see it, why can't she?

The movie begins to play, but I'm regarding her silently now, honored by this moment. She has let me know who she really is. I do the same thing, but all the time, because I don't know how to hide. Sitting here beside her, eating painstakingly arranged gummi bears, I can finally breathe. I am at peace.

She's a part of me. A string for this kite that is always flying, flying, nearly flying away forever. She makes the earth real. And when I'm with her, I'm real.

Charley is lying next to her on the couch now, head bowed and resting on her leg. His doggy derrière is perilously close to my person, and so I hurriedly scoot over, one eye fixed warily on his posterior. She seems even calmer when he is around, and I gaze at the two of them, grateful for the comfort they have both given me.

The movie has finished, a final swell of music crescendoing as the credits start to roll. This is the part I dread, the knowing it's begun to end. I would like to live in a universe of infinite Saturday nights, spent exactly like this. There would never be any Sundays. Sunday is the falling day, the day of knowing what's coming, and being able to do nothing about it, except wait.

But I am safe here, in the night. Behind these walls, in this room, on this couch. With her sitting next to me. I'm sixteen, and she's my best friend, and she always will be.

...Won't she?

Thursday, October 21, 2010

It Will Get Better

In response to the recent suicides by several gay teens, there is currently a campaign going around called "It Gets Better," featuring videos of the famous and non-famous alike, telling these young people that things do get better. I was inspired to create a video of my own, though this is geared more towards individuals on the autism spectrum than GLBT teens (but everyone is welcome to watch). It is a little lengthy, for which I apologize, but if you enjoy it, please "Like" it and pass it on!

Tuesday, September 28, 2010

Call for Participants: Please Repost!


I am recruiting males over the age of 18 with a clinical diagnosis of Asperger's Syndrome for a study to teach how to ask someone out on a date. Sessions will be conducted three to four times per week. The study is currently ongoing and participation for each volunteer should last for approximately three weeks. If you are interested in participating in this research, please contact Amy Gravino at Amy@amygravino.com. Thank you!

Study Participation Criteria:

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

Monday, September 20, 2010

A.S.C.O.T Coaching, LLC

I am very pleased and excited to announce that the A.S.C.O.T Coaching, LLC section of AmyGravino.com is now up and available for browsing! If you or someone you know is interested in college coaching services for students with Asperger's Syndrome, or any of the consulting or public speaking services I have to offer, please feel free to check out my site and pass it along! Click the banner below to go to the A.S.C.O.T Coaching, LLC main page. Thank you!

Tuesday, September 7, 2010

The DSM-V Asperger's/Autism Debate

Last night, I was perusing the Autism Speaks Facebook page, when I came across this post: http://www.facebook.com/autismspeaks?ref=ts#!/posted.php?id=75219157496&share_id=150715731619580&comments=1#s150715731619580. It's a link to an "In Your Own Words" blog written by a young woman with Asperger's Syndrome about why she feels Asperger's should remain a separate diagnosis from autism in the DSM-V.

I hadn't even gotten to read the blog post itself when I started reading the comments on that link. And there were many, oh yes, from parents/professionals/folks on the spectrum in varying states of outrage/agreement. But the comments that stood out to me the most were from a 16-year-old with Asperger's named Jordan. He flat-out was attacking people at certain points, and his whole overall attitude was doing a serious disservice to Aspies everywhere (you can read some of the things he wrote at the link there).

I was most disheartened by this, as you can imagine, and so I decided to write a response. It turned out to be a freaking novel (is anyone surprised?), but I both addressed Jordan and got out my feelings on the autism/Asperger's debate. This is what I wrote:

"Okay. I've sat here reading (almost) every response to this for the past half an hour, and my brain is aching. Jordan, let me direct this to you first...I know you have Asperger's Syndrome. Guess what? I do, too. But the way you have conducted yourself in this thread is giving a seriously bad name to "Aspies" everywhere. You've attacked people needlessly (telling them to "shut up"), and I find your entire attitude to be condescending and know-it-all. Maybe you didn't mean to come across that way. In fact, you probably didn't, but here's the reality. People aren't not listening to you because you have Asperger's--they're not listening to you because you're sixteen and you DON'T know everything. No one does, in fact. Heck, even I don't. I got this diagnosis at age 10, and here I am seventeen years later STILL trying to figure it all out. And even though I don't have the answers or a great, all-encompassing solution, here is one thing I do know:

We all want people to see our point of view. This is somewhat ironic because, being on the spectrum, we tend to have a difficult time seeing others' points of view. I know that when I was sixteen, all I wanted was to be heard, to be acknowledged. I see you on here, going on about how great you are, how you could have your grades up "if you wanted to" and how you plan to be a published author and this and that. There's nothing wrong with having goals or dreams, my friend. But from your comments I detected a serious amount of insecurity--like you felt you had to tell us these things over and over to "prove" that you deserve to be taken seriously. But if your arguments and the things you had to say were truly sound and well thought out, that's all you would need. No "proving" necessary.

But instead there is hostility pouring off of you in waves, and I recognize it, along with your insecurity, as I have seen in adult males on the spectrum twice your age at support group meetings I have attended. You may think that you don't need any help, but that's the surest sign that you do--and the day will come when you'll have to ask for it. I once felt the same way--I was downright ashamed to ask for help because I thought I should know how to do "these things"...and I didn't. So I suffered, and maybe I lashed out at people too, in the same way that you are. All it does in the end is cause more harm than good, and it further prevents having what you have to say be heard by the people you want to have hear it.

Anyway...back to the subject at hand. I understand both sides of the DSM-V debate. I'm currently a grad student in ABA, and I've done observation in classrooms with kids on every corner of the ASD spectrum. I used to have a fear not unlike the blog author's--of being "lumped in" and seen the way I saw those kids. But the fact is, Asperger's is a part of who I am. They can change the wording, but that doesn't mean its meaning has to be taken away. And if, in the process, it allows folks with Asperger's to receive the services they need (services I certainly never got in elementary, middle, or high school), then I can't see how it would be a bad thing.

It doesn't make us any less who we are, unless we let it. We are different--not better, not worse--just different, both from the rest of the world and from each other. But the more productive use of our energies would be to help one another, not tear each other down. All of the fighting and squabbling is a waste--a waste of time, and heart, the heart that I know we all have. A heart that beats for our spectrumite brothers and sisters, and all their loved ones.

My goal is and always will be to leave this world a better place for folks on the spectrum than it was when I got here, a goal I hope to accomplish by acting as a college coach for people with Asperger's, and by being a public speaker. I have spoken at autism conferences all across the country, as well as professional development workshops and school assemblies, and the overarching message I try to leave my audiences with is that we may be different, but we have much to offer the world. Each person on the spectrum has their own gifts and challenges, and should not be overlooked, no matter how affected or not they may be."

Saturday, August 28, 2010

Introducing: AmyGravino.com!

Hello, loyal readers of my blog! I am most pleased and proud to present you all with my brand-new, fully-functional website: AmyGravino.com!.

AmyGravino.com is your one-stop shop for everything and anything relating to moi. It has my bio, my C.V., pieces of my writing, articles I've written, video and audio clips from media appearances that I've made, and more. The page for ASCOT, my college coaching LLC, is still under construction (which is fitting because I'm still trying to hammer out the details of setting up the LLC), but everything else is finished.

I am trying to attract people looking for college coaching or consulting services, or anyone looking for an autism/Asperger's Syndrome-related public speaker, and I knew I needed to have all of my information in one place, hence the creation of this shiny new site.

Now, I know I am no website designer, and it certainly doesn't look as good as if a professional did it. But, I worked very hard on creating all of the pages and putting stuff together, so I hope that you will all enjoy perusing it. If you have any (constructive) feedback to offer, then please, by all means, do let me know. And if you like what you see, please feel free to spread the word of AmyGravino.com as far and as wide as you like.

Also, I have added a new feature to my blog here: the "Share" button. It can be found on all of my current and previous blog entries, and its function is to make it easier for you to share my posts with whomever you think might want to read them! So please do use this feature at your convenience. Thank you!

Saturday, July 31, 2010

Home Is Where the Hard Is

Sitting on an enclosed deck in the middle of a thunderstorm has become a favorite pastime of mine. I used to be terrified of thunder; as a child, even the slightest rumble would send me flying under the covers, shaking with fear. Even now, the storms seem scarier when I am inside, so I call upon my father to join me, where we settle into the green and white-striped chairs--his, always the recliner. With the sounds of whipping wind and falling rain all around me, I am calm.

My parents still live in the house I grew up in, about a two hour's drive from where I am now in New Jersey. Graduate school has kept me almost absurdly busy, and I don't go back there very often, except for the occasional orthodontist appointment or holiday.

There is a danger in visiting one's old hometown, in that you run the risk of seeing people you know. People from the past, who remind you of the person you used to be, and who you spent years trying to forget.

People you went to high school with.

The beige and black building is much smaller than I remember. At its feet rests a verdant landscape, the grassy, crater-shaped bowl used for baseball in summer and sledding in the winter. A long handrail in the middle of half moon-shaped steps leads the way to the front doors, whose once heavy handles yield easily to my hand. From faraway glance, it is peaceful, serene, and immaculately kept.

For me, it is and was my vale of tears.

It can be said that people spend most of their lives trying to figure out who they are. It can also be said that this process almost universally begins in high school. Jock. Nerd. Homecoming queen. Band geek. Class president. Loner. Which one are you? Now's the time to find out, to find others like you and stand together--allies in the silent war of the hallways.

But to do that, you first must know that you are a person. I never got that far.

Sometimes it was only a look. A brow furrowing in disapproval, eyes rolling almost comically far up into their heads, a brief scoff before finally turning away. I never knew what these things meant, but still I was left with a deep burning inside my heart. Chest heaving, cheeks flushed, the beginnings of teardrops forming in my throat. A powerful poison that was slowly, methodically, killing me.

I knew I wasn't like my peers. Not popular, beautiful, happy. Not normal. Through elementary and middle school, my apartness from them became painfully obvious in almost every way, but it wasn't until high school that I realized the true nature of the divide between us.

They were human. I wasn't.

I believed this. At first, it was because they told me. "Psycho. Freak. Loser. Retard." In between classes, alone in the hall, standing by myself not saying a word. If there was an opportunity, they took it, hurling insults like tommy gun-loaded paper airplanes whizzing through the air.

Am I someone? Am I even alive? the questions plagued my thoughts. After a while it became impossible to see the difference between their lie and my truth. Their words were pinballs, firing around in my mind through the maze of neurons and synapses, reverberating, shrieking as they traipsed and ran and looked for the end of the labyrinth, to no avail.

I was convinced that I wasn't really there; just a body, floating through those halls day after day, with no essence or tangibleness behind it. Nothing to tether me to the earth, to the rest of humanity. My soul belonged to them.

This was the storm that I lived in, with no shelter to run to, no protection to shield me. No matter where I tried to hide, the thunder always found me. And it roared.

My father gently rocks back and forth in his recliner, the screws squeaking quietly as I listen. The rain is beginning to subside now, the sky brightening, and the air is tinged with a crisp coolness. The trees are stained, their leaves heavy with damp. Tiny droplets hang from every edge, pulling them down as if bowed. Another survivor. I nod my head gently in reply. We have both made it through the storm.

Tuesday, July 27, 2010

Participants Still Needed!


I am recruiting males over the age of 18 with a clinical diagnosis of Asperger's Syndrome for a study to teach how to ask someone out on a date. All volunteers will be required to have their own transportation and must be able to come to Caldwell College (located in Caldwell, NJ) three to four times per week. The study is currently ongoing and participation for each volunteer should last for approximately three weeks. If you are interested in participating in this research, please contact Amy Gravino at AGrav3230@aol.com. Thank you!

Study Participation Criteria:

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

Monday, July 26, 2010

Thoughts on a Tragedy

I recently had the following link posted to my Facebook wall: http://news.yahoo.com/s/ap/20100722/ap_on_re_us/us_children_strangled. It's the horrifying story of a woman in Texas who murdered her two children with autism by strangling them with a wire.

What is there to say about a terrible story like this? It's sad. It's tragic. Beyond anything else, it's representative of a failure on so many fronts. It would be easy to blame the mother, to call her a whole host of names and condemn her to the lethal injection that is probably coming her way. But she is not the only one at fault here.

The articles mention that Texas is ranked #49 or #50 in terms of mental health services and supports. It's likely that there is also not much in the way of autism awareness, which leaves this woman--the parents of not one, but two autistic children--isolated, with no access to information or resources, and slipping deeper into the depression that the article said begun when she moved into that apartment.

Up here in the Northeast--especially the NYC area--there are autism organizations all over the place. Autism Speaks, Autism New Jersey, ASPEN, GRASP, the DJ Fiddle Foundation, AHA-NY, and more.

It is difficult enough raising a child with autism here, where awareness is high and resources are numerous. It is difficult, too, for we adults on the spectrum to find the services we need. Therefore, I can't imagine what it must've been like for this woman down in Texas, where there aren't many or even any of these groups, any support services of any kind; where "hope" is the longest long shot that there is.

It is circumstances like this that lead to desperation, to this woman thinking there was no other solution than the one she chose. Don't misunderstand me; I am not defending what she did in any way; she took the desperation she was feeling to its most extreme end, and two innocent children are now dead for it. But the whole atmosphere down there--the ignorance and the misunderstanding--is what helped to set the stage for this in the first place.

However...one thing that would move me to condemn her outright is how, in the article, she is quoted as saying, "They're autistic...not normal. Not normal. I want normal kids." That is an incredibly heartbreaking thing to say on top of everything, and unfortunately gives a sad insight into her mental process and perhaps that still of society at large--that having a "normal" child is better than having one with autism.

Had she even given the children up for adoption--which would have been better, because at least they'd still be alive--who knows how hard it would've been to find them an adoptive family because of their autism. But at least they would have had a chance. At least they would still have their lives.

So what do I think of this? I wish I could say I was shocked. I used to be, when I'd hear stories like this. Now I just add it to my growing mental list of horror stories that have come to represent such a system-wide failure. It is stories like this that make me ever-more determined to do what I do--to make this world a better place for individuals with autism, so that things like this never happen again.

Friday, June 18, 2010

Pity, Party of None

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

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

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

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

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

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

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

Wednesday, June 16, 2010

Participants Wanted for Research Study!

Hi, Everyone!

I'm currently attempting to get my thesis study underway, and as such, I am need of participants! Please see the Call for Participants below (you can also find it on the Facebook page of Autism Speaks, here: http://www.facebook.com/note.php?note_id=401225237905) and forward this to anyone you think might be interested. Thank you!


I am currently recruiting males over the age of 18 with a clinical diagnosis of Asperger's Syndrome for a study to teach how to ask someone out on a date. All volunteers will be required to have their own transportation and must be able to come to Caldwell College (located in Caldwell, NJ) three to four times per week. The study is expected to begin on June 21st and last for approximately three weeks. If you are interested in participating in this research, please contact Amy Gravino at AGrav3230@aol.com. Thank you!

Study Participation Criteria:

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

Monday, June 14, 2010

Interview on NY Talk Radio!

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

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

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

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

So, I am pleased to report that the interview went very well--I even got to read my "Letter to My Younger Self" on the air! If you're interested in listening, here is the link (just click on the "play" button, or click "Download" to download it to your computer): http://nytalkradio.net/wordpress/podcasts/your-beautiful-child/lucky-13/. Please do let me know what you think of the show if you decide to listen. Thanks, and I hope you enjoy it!

Tuesday, June 8, 2010

Friends with Benefits

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

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

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

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

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

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

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

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

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

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

And now, for a few pictures from the evening!

Linda Walder-Fiddle and me

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

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

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

Thursday, May 13, 2010

Everything in Moderation

So, here we are now on the 13th of May, and I have some wonderful new things to write about!

First of all, on May 1st, I had a first of my own: my first time acting as a moderator for a panel at a conference. AHA-NY (AHANY.org) is a support organization on Long Island for individuals with high-functioning autism and Asperger's Syndrome. My mom happens to be on the board of this organization, and I've known the president, Pat Schissel, for a great many years. I got my start in public speaking at AHA-NY's Spring conference ages ago, as a member of the teen panel when I was 14.

That was when the conference was still held at Roslyn High School, but now it's become bigger and better than ever, and for the past several years, has been held at Adelphi University in Garden City, NY. This year promised to be extra special, as the keynote speaker was John Elder Robison, author of Look Me in the Eye. As it turned out, John was also one of the speakers on the adult panel...the very panel that I was asked to moderate.

The topic of the panel was adults who had received their autism diagnoses in adulthood (in their 20s, 30s, 40s, and beyond) and how it affected their relationships with others and their lives overall. Aside from John, the other panelists were Ryan Oldis, Zosia Zaks, and Branden Plank. I remember standing, waiting, as Pat introduced me to the crowd. I actually spoke on another adult panel at that conference five years ago, with Stephen Shore and another person, and it was also the last AHA Spring conference that I attended. How different...how fitting, to be returning in this new role.

I think I did a fairly decent job, despite not having the effortless smoothness that seasoned moderators possess. I was able to meet John Robison before the panel, and after at the post-conference gathering at Pat's house, which was quite nice. And, funnily enough, I will be seeing him again at GRASP's annual benefit on June 8th in NYC, where he is receiving the DSM (Distinguished Spectrumite Medal) award, and where Michael John Carley has asked me to speak for a few moments about what GRASP has meant to me.

In other news, on April 29th, I defended my Masters thesis for a second time. I spent months revising and reworking my proposal, with the help of my advisor, Ken Reeve, and together we made my study a thing of beauty to behold. I hardly felt nervous at all as I prepared for my defense--and those preparations included making food for the big day to bring to my committee: Quinoa pilaf with spring vegetables (asparagus, orange bell pepper, red bell pepper, zucchini, golden beets); mini-grilled cheese sandwiches with fontina, Parmesan, sage, and prosciutto; and a blueberry cornmeal cake for dessert.

The defense went so smoothly--far more than the first one had back in December. And I am pleased as punch to report that my proposal was accepted with minor revisions! So that means I just have to make a few small changes, and I can then start running my study. I've met with my professor and gone over the changes that need to be made, and if all goes according to schedule and I obtain my participants without too much trouble, I should be up and running by the beginning of June.

The last bit of news that I have to share is that this weekend coming up is very special, because it's my graduation. Sunday is the commencement ceremony, and I'll be decked out in my cap and gown, walking up that aisle and on stage to receive my diploma (holder). I feel like a bit of a phony because I'm not actually going to get my diploma until August (since I'm not finished with my study yet). But the event itself is still important, and I just can't believe it's finally here.

I'm going to get pictures with my professors and my family (my mom, dad, godmother/aunt, and godfather/uncle will be in attendance), and will put them up here on the blog once I have them, so keep your eyes on this space. :)

Sunday, May 9, 2010

Thoughts on Mother's Day

Mother's Day is the day we celebrate mothers. We also celebrate foster mothers, grandmothers, aunts...those who are with us now and who have come before us to play that unique, unalterable role in our lives. I was at my parents' house on Long Island yesterday. My mom's cousin Lenore and her daughter Jen came from New Jersey to celebrate the day with us. We were eating dinner, talking of many different stories of life in years past, moments from my mom and Lenore's youthful days, and memories in which our lives intertwined in different ways.

One particular memory that came up was what happened to my mother when she developed post-partum depression after I was born in 1983. I was five weeks early, as many people know--born March 23rd, instead of the expected April 27th. Everything was chaotic in those early days, though blissful; my mom nursed me without issue from March right on through to the summer.

It was in July that things changed.

I sat listening as my father described what it was like--how she would stand in the doorway of our old house on Jamaica Avenue, standing as if waiting for a trolley car to come by. She'd begun to slip before then, and so my dad had ferried baby me off to New Jersey, where my Sitto and other grandparents took care of me. He watched her crumbling, the very threads of her sanity coming unloosed, day by day. Hallucinations. Thinking she had the answers to the world's problems...while my dad sat helpless, unable to find the answers to hers.

She was hospitalized in the psych ward at Mather Hospital for a brief period, but was able to convince her doctor to have her released. But still, my dad couldn't handle her, and as the months went on, she drifted farther away. He went to bring her back to Mather in November, on the eve of Thanksgiving, only to find out that their 11-bed ward had no room for her--they'd given her bed away.

The next nearest facility was in Smithtown, and the only vehicle able to take my mom was a police car. It was late at night, and my dad drove as fast as he could in his then-car, a Volkswagen Rabbit, trying to keep up with the cruiser.

My mom stayed there until January, and every day, after he got finished teaching, my dad would go to visit her. He'd buy her egg creams in the hospital cafeteria (her favorite), and would stay with her for the two hours that visitors were allotted. He described how, when he would leave, the door of the ward would coldly lock shut behind him. I could tell how painful it was for him not only to visit, but to leave her there.

The doctors tried several different medications to help my mother, but none worked. This left only one other course of treatment: electroshock therapy. She had eight treatments in all; it was finally after the fourth that my father said he saw a change in her--saw the light begin to return to her eyes as she slowly grew lucid. The hallucinations stopped, and she became something like her old self again.

Eight electroshock treatments. That's what it took to restore the chemical imbalance in my mother's brain, to bring her back from this dark place that she'd been living in. She was prescribed lithium and seen under a doctor's care for a year following her release from this facility. My dad was able to bring me back to Long Island, and there, my mother learned to take care of me, for a second time.

My father is not what you'd call an emotional man. As I sat at the dining room table, my knees pulled up tight to my chest, I could see the pain in him rising to the surface. The slight watering of his eyes as he recalled the details so vividly. I felt a tightness in my own chest, an overwhelming sadness that my mother and he ever had to go through that. I know, without question, that it was one of the most difficult periods of both their lives.

Even though I know I have no reason to, some small part of me feels responsible for what happened to her. I was just a baby at the time, but it was carrying me that caused the chemistry of her body to change. And it left her sick...sick to where I'm sure my dad must've wondered if she would ever truly be well again.

I was a lousy person when I was a teenager, but, most teenagers are. I know I wasn't as grateful for her as I should have been, and now, especially after hearing my dad recount that story today, I don't know if I'll ever be grateful enough. I've heard it said that mothers do so much for their kids--they help them, love them, discipline them...and sometimes suffer for them. But I never wanted my mom to suffer for me.

Two weekends ago, she and I went to visit a former teacher of mine from high school, Ms. Llorens. I had her for Latin in 7th grade, and her son was in the same grade as I, and only one of a few classmates of mine who ever treated me decently. She was diagnosed with breast cancer not long ago, and has undergone chemotherapy, and, after taking the month of May off, will have to undergo radiation treatment throughout June.

Although my mom has visited her several times (always on Sundays), I hadn't had a chance to see her since finding out about the cancer. I didn't know what to expect when we went over to her house, and then the door opened...and she was still her. She had a knitted cap on, and her eyebrows were nearly all gone as a result of the chemo. But when she smiled, it was the same wide smile I'd always remembered, pushing her cheeks up and rounded as it spread across her face.

We sat on some couches in a room next to the kitchen, drinking tea, and she and my mom ate pieces of the blueberry cornmeal cake I'd brought that was leftover from my thesis defense. The topic of conversation varied widely, and at one point, one of her other sons called the house. She briefly spoke a bit of Spanish to him on the phone, and the sound of her speaking it was like music. I remember how, when I was in high school, she'd stand outside her classroom greeting incoming students with a melodious, "¡Hola!" and that big smile.

The greatest connection Ms. Llorens and I share, however, is that we have the same birthday. I sometimes joke about how everyone and their brother seems to be born on March 23rd these days, but I never minded sharing a birthday with her. Somehow, it made it more special, and I would always walk into the Foreign Language Office and say, "Happy Birthday, birthday buddy!" and she'd smile right back at me and wish me a happy birthday.

So as I sat there, cup of tea in hand, listening to her talk about the cancer...the sheer awfulness of being told that you have it, and the strength that she hasn't had because of it, and how long it took her just to be able to leave the house, I could feel the tears springing up at the corners of my eyes. I told her that if I could, I would take all of the pain she experienced/is experiencing and would feel it for her, so she wouldn't have to. And I meant it.

I later told my mom the same thing, that if she ever got sick in some way, I would want to do that for her. She just chuckled softly in her mom way and said, "Thank you, sweetie." But she was sick, once upon a time, and I cannot imagine what Ms. Llorens is going through, or what my mom and dad went through all those years ago.

The only thing I know is that I would give up the entire world if I could take away all of the fear and anxiety and anguish that they felt. Because I know moms are supposed to be the givers, the sacrificers, the do-it-alls...that's what we celebrate on Mother's Day. The seeming infallibility and invincibility of these wonderful women who have shaped our lives so profoundly. To know of Ms. Llorens' and my mother's vulnerability is frightening, in part because I know I'm no longer the little girl who thinks grownups are strong and perfect. But it's also scary because I can't do a damn thing about either situation.

Well, maybe that's not so true. I know that one thing I can do is to hold both of these women close in my heart, as I always have. And whatever guilt I may feel over my mother's sickness or grief over Ms. Llorens', I still want what I've always wanted: for them to be proud of me. So all I can do is honor them, by being the type of women they are. The givers. The sacrificers. Mothers who do everything and ask for nothing, but deserve so much. Hopefully, someday...I'll be able to give it to them.

Me, around age 3, with my mom.
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Monday, April 19, 2010

Exciting News

I have something wonderful to share with you all, though I'm beginning to feel like a bit of a broken record! But it definitely deserves to be mentioned on my blog, so here goes.

As I recounted in a previous entry, back at the end of February, I participated in a Think Tank at Autism Speaks' headquarters in NYC. The purpose of this was to discuss the result of the Community Life section of the AFAA Town Hall meeting that took place in October.

While I was at the headquarters of AS, I briefly met a man named Marc Sirkin, the Chief Community Officer. He e-mailed me shortly thereafter, saying he'd looked at my blog and wanted to post my "Letter To My Younger Self" to Autism Speaks' main blog.

All I could think of was what a great opportunity it would be to really reach and (hopefully) help a wide range of people, so I said yes. After a couple weeks of waiting, it was finally posted up on Thursday. You can see it here: http://blog.autismspeaks.org/2010/04/15/itow-gravino/

A link was also posted on Autism Speaks' Facebook page, here: http://www.facebook.com/autismspeaks?ref=ts#!/posted.php?id=75219157496&share_id=118852414795530&comments=1#s118852414795530.

The response has been absolutely unbelievable. As of now, I've received 47 comments on it, and it's received over 200 "likes" on the Facebook page and there are 69 comments so far there. The comments have been incredible, more than anything I ever would have expected. I was moved to tears by some of the things people said, and I'm so grateful that I did take this opportunity.

I also found out yesterday that my post made Wordpress.com's list of Top Posts for April 17, 2010, coming in at #55: http://botd.wordpress.com/2010/04/17/top-posts-1448/.

It's becoming more apparent to me that there are two stages to this whole thing: the initial impact of when the blog was first posted, and now this rippling effect that seems to be taking place. Who knows what else may occur in the coming days, weeks, even months? I'm excited (and a little bit nervous) to find out.

To my new followers here on my blog and all of you who've come here by way of Autism Speaks: Welcome! I'm so happy to have you. I would just like to restate that I do make public speaking appearances at conferences, support group meetings, professional development workshops, school assemblies, and more, so if you are interested in having me speak to your group and read my "Letter to My Younger Self," please feel free to contact me via e-mail, or contact my business manager, Nicole Turon-Diaz, at learningbydesign@verizon.net. Thank you!

Tuesday, March 23, 2010


Today is my birthday.

Twenty-seven years have I been on this planet now. It feels like longer. And yet it's going so much faster now than it used to, faster than I have figured out how to handle.

My friend Nicole is coming over tonight. We were supposed to go out for dinner, but plans have changed slightly and now I'm going to be cooking dinner here. That makes me really happy, actually, because I love to cook. I'll be making chicken cutlets with asparagus, capers, and shallots. And for dessert, a blood orange polenta upside-down cake with whipped crème fraîche. I like the idea of making my own birthday dinner, as antithetical a concept as it seems to most people (cooking on your birthday? Pshaw!).

Then, I'm having a party this weekend, which will consist of dinner at a restaurant here in Montclair called Raymond's, followed by bowling at Eagle Rock Lanes in West Orange. I miss bowling, quite frankly, and I know how fun it can be, so I thought, what the heck...let's do bowling! I'll just be happy to see my friends and to spend time with them.

For now, though, it is quiet. The skies are grey outside and the temperatures have dropped from the record highs of this past weekend. In truth, I'm glad they did. I prefer the slow increase from cold to warmth, rather than it happening so suddenly. Already, the tree outside my bathroom window has begun to bud. The grass is green from the rains we've had over the last week, and the earth is beginning to awaken again.

It's all about time. Things happening in their own due time, like with nature. Everything that's happened over this past year has brought me to where I am now, and I really feel like there are some great things in store for 2010. I've learned by now not to get my hopes up, so I will simply follow the old adage taught to me by my dad: Hope for the best, expect the worst.

When I went to a Herstory womens' writing group last week, one of the women there asked me how old I was. I told her, and she said, "Wow...you look like you're seventeen," in this sort of awed voice. It's hard to believe that I left 17 behind so long ago. I spent many years trying to run away from it, to run as far as I could from the awfulness of high school and my adolescence. At last, I finally feel like I can stop running, and just continue through life at a casual stroll.

Happy, happy birthday to me...

Saturday, February 27, 2010

The Beat Goes On...

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

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

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

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

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

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

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

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

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

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

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

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

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

"I'm not sorry."

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

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

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

Tuesday, January 19, 2010

Masters Thesis and Much More

Oh, good heavens, I've done it again. I have let time get away from me and neglected to update this blog. My apologies, faithful blog readers!

So where do I begin? Well, on November 13th, I participated in a National Town Hall Meeting put together by AFAA (Advancing Futures for Adults with Autism). Linda Walder Fiddle had asked me if I would be willing to participate as a self-advocate, and I readily agreed. The meeting was held at a central location in Chicago, but there were about 15 satellite locations all across the country, one of which was in Newark, which I attended.

The meeting was unlike any other that I'd been to, devoted entirely to issues faced by adults on the spectrum and their families and caregivers. In the very beginning, we were given keypads, which we were told would be used for voting purposes throughout the day. The first poll taken had to do with demographics, and the questions were the same as they'd been on the registration form we had to fill out.

One question asked what your relationship to autism was, and one of the choices was "Individual on the Spectrum." I chose that option, of course, and waited anxiously to see what the results would be, as after each question we were shown the percentages for each answer, from all the votes cast in at all the satellite sites.

It was no surprise that the biggest groups of attendees were parents and professionals, and the percentages reflected such. The percentage of attendees on the spectrum? 7%. That's seven percent, out of the just over 1,000 participants at all of the meetings nationwide. It's...not really a terrific number, to be honest. I am very glad that there was a spectrumite presence at all to begin with, but it just seems rather low, and I hope that the number will increase greatly at future meetings.

There were three categories that we discussed: Housing, Employment, and Community Life. Each category had a list of issues within it that we talked about with the people at our table, and a transcriber would write down the things we said on a laptop. At the end, a vote was taken as to which issue should have the highest priority on a national agenda (from a scale of "Not Important to Include" to "Must Include"). We were also able to suggest an issue that wasn't on the list and possibly get it added so it could be voted on.

In the Community Life category, I was dismayed not to see any mention of "helping adults on the spectrum develop and maintain healthy interpersonal and sexual relationships," and so I voiced this to our group. Imagine my surprise and delight to see that it wound up being added to the list of issues! When the vote was taken, 71% of the attendees chose the issue as "Important to Include" or "Must Include" for a national agenda!

I don't know for sure that it is because of me that it was added to the list, but it seemed too strange of a coincidence for it to be otherwise. I was even more excited when the issues were weighed against each other (so people voted for which one was most important for a national agenda). "Helping adults on the spectrum develop and maintain healthy interpersonal and sexual relationships" came in at #4 out of the five issues. This didn't bother me so much as what was selected for #1: "Educate first responders about the challenging behavior that might arise in dangerous situations involving adults with autism so that they are prepared to handle these occasions in the safest and most effective manner."

Given that most of the participants in the meeting were parents/family members or service providers, I suppose it isn't too surprising that that's what was picked. But I highly doubt that individuals on the spectrum themselves would have chosen that as number one. It also smacks of "about us" instead of "with us"; that is, that the priority is still "determining what to do about us" instead of "talking with us about what we want and need." I'm not saying that this is what the people there thought or felt, but it is the feeling I get when I see such an issue chosen as a "top priority" for a national agenda.

Aside from that, though, the meeting was very productive, and I was glad to have attended. I do hope that the number of people on the spectrum will go up at future meetings, because that representation is so crucial for those not on the spectrum to understand where we're coming from. One of the warm-up questions we had to answer to get acquainted with our tablemates was, "Why did you come to this meeting?" My answer was, "To be a voice for those who don't have one." Going by the attendance figures, there were sadly quite a few. I just hope that I did them proud.

It's been a little over a month now since I defended my Masters thesis. Yes, I did indeed finally reach that point! I worked tirelessly on my proposal, trying to tweak and modify my study to make it as good as it could be. I came to the campus armed with homemade food for my committee (roasted, marinated bell peppers; a cold antipasto platter; an herb-leek tart; and brownies). Any nerves I'd started to feel as I set up my presentation abated as I stood there facing my professors, waiting to begin, because I knew at that moment that I was as ready as I would ever be.

The final verdict: Approved, with Major Revisions. What does this mean? Well, I'm going to have to make some significant changes to my study. The committee made some excellent suggestions, and so my thesis chair and I are going to try to use those to make the study stronger. I'll have to defend my proposal again, probably at the end of this month or the beginning of February. I don't particularly mind this, but I just want to be on good footing when that time gets here.

Another exciting development that's occurred is that I have been approached to act as an AS college coach for a few individuals who have Asperger's syndrome. Dr. Shana Nichols, co-author of Girls Growing Up on the Autism Spectrum, wrote to me to tell me of two young women that she is working with, and asked if I would be interested in working with them in my capacity as a certified AS college coach. I was beyond thrilled to be asked, and so of course, I said yes.

I've said it before, but it bears repeating: I want to be an Asperger's syndrome college coach when I graduate. I know that most colleges and universities don't even have such a position, and so I don't doubt that I will have to create it myself where I may end up being employed. For the time being, though, coaching privately seems like an excellent way to gain experience, the sort of experience that might help me get my foot in the door at a college or university. Most importantly, however, getting to do this will allow me to achieve my ultimate goal, which is to help people on the spectrum.

(And since this is my blog, I'm going to indulge in a little shameless self-promotion now: If you, or a family member, or client are in need of an Asperger's syndrome college coach, I am available for hire! My rates are flexible and can be modified based on individual financial need. For more information, please contact me privately at AGrav3230@aol.com, or contact my business manager, Nicole Turon-Diaz, at learningbydesign@verizon.net.)

Finally, in book-related news, I've decided to send a proposal for The Naughty Autie to Future Horizons, as the woman there, Kelly Gilpin, has previously expressed interest in it. It's high-time that I did something, though, and if I don't publish my book this year, I feel as though I will have missed the boat altogether.

In addition, the book, coupled with my Masters thesis study and a third documentary that I've been approached to appear in (it's called Desire and is also directed by Keri Bowers, the woman who did ARTS and co-directed Normal People Scare Me, and is going to be about people on the autism spectrum and relationships and sexuality), will really create a more complete picture of what it is I represent and what I aim to do to promote a better, brighter future for adults on the autism spectrum.

Well, I think that's about all I've got for now. I'm nervous with anticipation because this week I should be hearing from the Autism Society of America, to whom I submitted a proposal for their annual conference that's going to be in Texas this July. So look for more details about that in my next entry!