Recent Public Speaking Appearances and Events!

The last month has brought a wave of several wonderful events in which I am proud to have participated. First, there was Autism New Jersey's annual conference, held on October 17-18th in Atlantic City, NJ, at which I spoke on the Self-Advocate Panel. The panel went on to receive a mention on Autism New Jersey's "Conference Highlights" page. Here I am with the other self-advocate panelists:

Left to right: Kerry Magro, Amy Gravino, John Richardson, and Lindsey Nebeker.

That same weekend, on October 19th, I co-presented a workshop on autism/Asperger's Syndrome and sexuality with Dr. Peter Gerhardt in Richmond, Virginia. The presentation--titled Sexuality & Sexuality Instruction for Individuals with Autism Spectrum Disorders: What Everyone Needs To Know--was co-sponsored by Virginia Commonwealth University and the Autism Society of Central Virginia:

 

With Dr. Peter Gerhardt.

I want to thank Autism New Jersey and Dr. Gerhardt from the bottom of my heart for inviting me to be a part of these presentations. The response and feedback that I received from members at both presentations was tremendous. The workshop with Dr. Gerhardt was a liberating and thrilling experience in particular, and was the first of what I hope will be many more presentations on the subject of sexuality and autism. It is my goal to become a more recognized authority on the subject, both as a professional speaking from a clinical standpoint and a person on the spectrum coming from a personal perspective.

Want me to come speak at your school or organization? Any and all public speaking or media inquiries should be directed to my business manager, Nicole Turon-Diaz.

In Plain Sight: Thoughts on the Center for Autism and the Developing Brain

The life of a child with Asperger's Syndrome is often filled with routines: Those that are built for us by others, and those that we create ourselves. The structure of a day divided into evenly-timed segments is a source of comfort, of knowing for certain what will happen next. When the time is ours, the routine is different, but it is made of our own determining, borne from the desire to possess the smallest amount of control over our lives.

I remember being buckled in my parents' car, the arms of the straps across my lap and chest holding me close and the humming engine vibrating under my feet. It didn't stop until we were parked in front of a strange building with too-shiny windows and loose pebbles scattered across the unsmooth asphalt.

That was when a new routine began.

I am no stranger to the inside of an office: Offices in child psychology buildings, offices of occupational therapists, social workers. An endless procession of white coats and sweet-strong perfumes and colognes wafting in and out of every door, applied liberally as if to conceal the sterile odorlessness of those rooms. Every place I went seemed shrouded, far from the public's view, tinted glass keeping the broken children hidden.

This same thought passed through my mind when I recently paid a visit to yet another such facility.

Situated in the verdant hills of White Plains, the Center for Autism and the Developing Brain (CADB) sits on the edge of treatment and care for individuals with autism across the lifespan. A casual stroll onto the Westchester campus of New York Presbyterian Hospital--where the Center is located--reveals that the building in which it resides was a men's gymnasium in a past life, back in the days when individuals with mental health issues did not live at home, but instead received long-term care at a "convalescence" facility.

A few weeks ago, I joined several of my GRASP colleagues on the campus for the annual conference of AFAA (Advancing Futures for Adults with Autism). As part of the conference program, a presentation highlighting longitudinal studies of individuals with autism was given to us by Dr. Catherine Lord, who is the founding director of CADB.

Later in the day, we received a full tour of the Center, which was also given by Dr. Lord. Visiting the Center left quite an impression on me, though even now I am not sure if it is a good one.

In the main room of the Center, the ceiling is high and open--remnants of the gymnasium from the days of yore. In the middle of the room is a playroom/gym, strewn with toys and activities, and rows of observation rooms line the perimeter surrounding it. A tall and thrumming fluorescent light acts as a divider in between, and toward the entrance are glass display cases, each covered in a grid-like pattern and brightly back-lit.

It was these lights that caught my immediate attention, the whiteness being so stark as to jar my eyes from the earthy, calm tones that dominated the rest of the decor. Though I have never had extreme sensitivity to light, several of my colleagues did, and found themselves quite discomforted in the presence of those lights.

When I later visited the CADB's website, I was surprised by what I found: Multiple references to the "soft" and "natural/soothing" lighting (the references in links two and three are in the captions on the pictures on each page). I don't know for whom those lights actually are soothing, but I would have expected a bit more consideration to have been made in the design of a facility in which treatment is provided for individuals with autism.

As I walked through the still and silent corridors that day, I felt the memory of all those offices returning to me. Behind the toys, the cheery colors, the lush, green leaves of new plants, was that same all-consuming feeling that I found as inescapable then as I did when I was a child:

I am here because something is wrong with me.

Awareness about and visibility of autism and autism spectrum disorders has come so far since I was a child, as have ideas about treatment and embracing neurodiversity. Yet in spite of all this, the feeling of being "different" persists, and is augmented by the fact that a swing set surrounded by four walls and a two-way mirror is a far cry from a swing set on a playground bathed in sunlight.

At the time, I don't think I fully understood why I had to go to all of those offices, but I was always, always aware of being away from the light.

The very existence of CADB is tremendously promising, however, and represents a step in the right direction. It is my hope that facilities such as theirs will incorporate input from individuals on the spectrum into their design--the design of their buildings and of their programs.

It is we who spent so much time in these places growing up who can offer the best insight into how to make the experience a better one for individuals on the spectrum--not only while they are there receiving treatment, but as a positive foundation for the rest of their lives.

Auti-Sim: A Lens into Autism for "Neurotypicals"?

An article published in the UK newspaper The Independent was recently brought to my attention. The article in question describes a computer "game" that is actually a simulation of what it is like to live with autism. 

More specifically, the program focuses on the sensory issues faced by people on the spectrum (light, sounds, and so on), and--going by the description in the article--exaggerates these features of the setting in the game (a playground) to give the user an idea of how the world looks from an autistic perspective.

After taking the time to consider the implications of such a "game," I have a few thoughts. On the one hand, this is a remarkable concept. For almost all my life, I have had to explain myself and what it is like to see the world through my eyes. Individuals on the spectrum are tasked with having to constantly explain ourselves to "neurotypicals," and this is especially daunting when you have difficulty verbally expressing yourself. 

For there to be something like this that could just give people a straight-up lens into my experiences could make a huge difference in extending compassion and assistance to people on the autism spectrum, especially less affected folks who often have a more difficult time getting help because we don't "look" like something is "wrong" with us.

On the other hand, however, this is also a dangerous concept, and one that could do a great disservice to people on the spectrum. There's a saying that goes "If you've seen one person with autism, you've seen one person with autism," and the same holds true for how each person is affected by their autism--some are more affected, some are less affected. 

To truly give the family members or loved ones of a person on the spectrum an idea of what it is like to have autism, you would need to specifically tailor this program to the issues of that individual, because "one size fits all" absolutely does not apply here. 

Another concern I have is that the creators are referring to this as a "game." For those of us on the spectrum, this is distinctly not a game; it's our lives, and what we go through on a daily basis. We can't hit pause, or mute, or turn it off when we don't want to deal with it anymore, and it worries me that neurotypicals who would try this would fall into that line of thinking. 

Also, oftentimes people on the spectrum are described as being "robotic," and it concerns me that a program like this would inadvertently give credence to the idea that we're somehow "not human"; that we're more like computers or machines, and thereby reinforcing that "otherness" and the accompanying stigma that we've all struggled with for so long.

Stepping back and looking at the bigger picture, I can see what the program's creators are trying to do. But I also think that the details are incredibly crucial, and such a program could end up being very problematic on certain levels. 

This program is a significant move in the right direction, and offers the potential to give non-spectrum people a window into autism, and could prove tremendously beneficial to families and individuals in their attempts to obtain appropriate services and supports. But it is far from perfect, and could certainly use a long list of disclaimers, addenda, footnotes, etc. to go along with it.

I Won't Go Back: The Sandy Hook Shootings and Asperger's Syndrome

Aurora, Colorado. Clackamas, Oregon. Newtown, Connecticut.

These three places have one thing in common: Each has been the site of a recent mass shooting. While the loss of life at each has been horrific, the massacre in Newtown has struck an especially raw chord, as it took place at Sandy Hook Elementary School. The gunman shot his way into the school, and several teachers, the school principal and psychologist, and--sadly--twenty young children, were left dead in his wake.

Almost immediately, people were scrambling for answers: Who was the shooter? How did he manage to bring several weapons into a school? Why would he commit such a heinous, despicable act? The media has been very quick to provide answers to these questions--though not necessarily the right or responsible ones. 

Within a day of the shooting, at least two major news outlets were speculating that the shooter--who turned the gun on himself--had some form of Asperger's Syndrome. So-called "experts" were trotted out onto programs such as Piers Morgan Tonight, and described Asperger's in the ill-informed fashion so typical of someone who does not know what they are talking about. 

Even with only this, the fear and paranoia have begun to build, and with them, a creeping terror in the pit of my stomach for what this will all ultimately mean for people living on the autism spectrum.

A few nights ago,  Linda Walder Fiddle, of the Daniel Jordan Fiddle Foundation, introduced me at the Hope Swings autism gala, where she was the invited honoree. During her acceptance speech, she referred to me as "one of the premier autism advocates in the country." 

Yet I am sitting here now, trying to make sense of the Connecticut shootings and the media's irresponsibility in characterizing the shooter as having Asperger's Syndrome, and despite Linda's glowing accolades...I am at a loss. As I wade through the jumble of disbelief, sadness, heartache, and a steadily growing sense of fear, there is only one thing that I know for certain:

I won't go back.

I won't go back to believing that I am the only person going through what I am going through.

I won't go back to being that voiceless, frightened girl who thought that she was nothing and would never be anything.

I won't go back to when words like autism and Asperger's Syndrome had no recognition, no meaning...no place in the world. 

Autism and Asperger's Syndrome do have meanings now...and that is what worries me. All too easily, a story on the news translates into frightened parents, children who believe their AS peers are killers, and a stigma that can never be fully shaken. All too easily, children and adults on the spectrum--traditionally far more likely to be victims of violence than perpetrators--can become victims anew, all as the result of a crime committed by a person who in no way represents the overwhelming majority of people living on the autism spectrum.

If I truly am that person that Linda described me as, then my role in this becomes clear: 

I will fight. 

 
I will stand up and speak out for as long as it takes to ensure that no person on the spectrum is unjustly marginalized, disenfranchised, railroaded, or otherwise bullied by a society that wants to demonize us. 

I have to, because there is no other option. There's no reversing course, no shuttering us away in the dank institutions of the past....no undoing the work that so many of us have done.

I won't go back. 

...Will you?

Review of "Night of Too Many Stars"

A few weeks ago, I was fortunate enough to attend Night of Too Many Stars, an annual autism fundraiser hosted by Jon Stewart and held at the Beacon Theatre in NYC. I was asked by Autism Speaks to write a blog post for them about the event. This was originally published on the Autism Speaks blog on October 20th, 2012 [Link here.]

**

From the moment you enter the front doors of the Beacon Theatre and lay eyes upon the gilded walls and brightly painted ceilings, you are in another world. The Beacon looked to me the way that I’ve always imagined theatres to look like in my dreams: Somewhat magical, and with the power to make you think you’ve left your cares and worries behind, even for just a few hours.

For many people, however, A Night of Too Many Stars had everything to do with our cares and worries, and was the reason why we were there. My friend Nicole and I were seated in the very last row of the Right Orchestra section, but our view was still fantastic.

A collage of differently-shaped television screens hung against a colorfully lit curtain, and white lights dazzled from above in multiple configurations. The house band was situated on the right side of the stage, and the Night of Too Many Stars logo was displayed proudly on the center screen, which served as the backdrop for the main attraction.

And what an attraction it was.

The night flowed almost effortlessly, with Jon Stewart as a steady guiding hand and host. It was my first time seeing him in person, but he looked and made me laugh just like he does on TV.  Some of my favorite moments of the night were watching Jon, who sat crouched over by the band when other comedians or guests were doing their skits, crack up laughing. I’ve always wondered what makes the people who make me laugh laugh themselves, and that night, I got to find out.

As with any live show, the night had its high point and its low point. The low point unquestionably came when they had two girls from “Jersey Shore” onstage, along with a cast member from “The Sopranos” impersonating New Jersey governor Chris Christie. It was absolutely, bar none, a complete flop. All the skit consisted of was the girls swearing for no reason, and “Governor Christie” eating a sandwich and making fun of the girls for no reason. It was painfully unfunny, as evidenced by the fact that nobody in the audience was laughing, and you could hear the collective sighs of relief once it ended.

Then there was the high point.

Throughout the night, they showed videos of some of the various autism programs that the monies raised would be going towards. At one point, a video of a young girl with autism named Jodi was shown. As part of the intensive treatment Jodi has undergone since age 2, she plays the piano; now, at 10 years old, Jodi is a huge fan of Katy Perry.  In the video, she is seen playing the Katy Perry song “Firework” on the piano, and this segued into Jodi playing the same song on piano right there on stage…with Ms. Perry joining her for a duet.

It was one of the most wonderful things I have ever seen. You would have been very hard-pressed to find a dry eye in the house after that number, especially given that it concluded with Jodi getting up from the piano and wrapping her arms around Katy in a big hug. Having played the piano myself as a child, the moment resonated with me on a personal level, but what really made me nearly lose it was when Jon Stewart came back to the stage, his eyes clearly red-rimmed from tears, and how he had to pause because he could not speak for fear of crying.

As exciting as the celebrity-filled moments were, the lens through which I ultimately viewed the evening was what it all means for people on the autism spectrum.  I found myself taking mental notes of things that I would do differently, such as some of the language in the program that we were given. 

Phrases such as “autism robs children and adults of their capacity to function normally in society,” jumped out at me, as did some of the comedians who used parts of their act to harshly make fun of “nerds,” or who said things like “This is what happens when you get rid of bullying.”

Being a person who has lived on the autism spectrum her entire life, and who knows all too well what it feels like to be bullied, I think that I had a different perspective than the majority of the audience. While Night of Too Many Stars is certainly a wonderful, worthwhile event, and I am thrilled that a child with autism was afforded such an incredible opportunity and made so visible, the things that I mentioned above show just how much work there is still to be done.

After I first arrived at the Beacon Theatre and got to my seat, I walked up towards the front of the theatre. There I saw people that I know from several autism organizations, and was happily and warmly greeted by all. In the past, I’ve often attended events where I’m just with the person who “knows people”…but this time that person was me, and in a night filled with so many stars, I felt like I was one of them.

It is my hope that all people on the autism spectrum will have the chance to be the stars of their own lives, and with the continued help of awareness and fundraising events like Night of Too Many Stars, it will one day happen.

Two Steps Forward, Five Steps Back

The above comments (click picture to enlarge) are comments that I recently saw on a Youtube video of Conan O’Brien promoting Night of Too Many Stars, which I was actually fortunate enough to attend this past weekend (more on that later), and which airs on Comedy Central this weekend.

To say that I was disheartened when I read these comments is a complete understatement. A great sadness overwhelmed me, followed swiftly by pain-fueled anger; not a sudden, unprovoked rage; but a rolling boil of frustration that never fully goes away, but instead just gets quieter or louder depending on the circumstances.

I know what the response of many people might be to this: They'd tell me that these are random Internet trolls, Youtube is a cesspool of stupid comments, and that there’s no point in paying them any mind. The reason that these comments bother me, however, is that I truly feel like they represent a cross-section of this country, and of the world. They represent the people who have a passing acquaintanceship with autism, but have no reason to ultimately care about it.

These are the people who interview us for jobs. The people who decide which laws to pass and whether people on the spectrum will have their medications/services/supports covered by insurance. These are the people who see us in the supermarket, or on the bus, or at the mall, and cast dirty looks in our direction.

And, in some cases, these are the people who work in special programs, schools, and group homes looking after the welfare of people with autism.

That’s why these comments bother me. Because this is the world that people on the autism spectrum have to live in. It’s the world that I have to live in, and it frustrates me that, despite all of the awareness-raising and advocacy work that I and many others have done, people can still cling to these tired notions and view autism in such a negative light.

I’ve heard time and again that the hardest people to bring on board to autism-related causes, to solicit donations and support from, are people who have no connection to autism. My battle is more for hearts and minds than for wallets, but I am starting to see that the fight is just as uphill. I’m not going to stop fighting, even if things like this do make me feel like I’ve lost my footing for a moment.

But I can’t deny that things like this make it all feel like that much more of a challenge.

Autism Speaks "Autism Votes" Ad Campaign

A few weeks ago, I was asked to participate in the filming of an ad campaign put together by Autism Speaks called "Autism Votes," which is aimed at getting politicians to focus on autism as an issue in the coming elections this November. The campaign has since been released, and I was chosen as one of the featured speakers in the video:

 

In addition to the video, a few other speakers and I were personally profiled on the Autism Speaks website. Below is the testimonial that I wrote explaining why autism is important to me, a self-advocate and college coach for students with AS, as an election issue:

"When you’re running a campaign, you want voters to focus on what you can do, as opposed to what you cannot. You want to draw attention to your strengths, rather than your challenges. It is exactly the same with autism. Individuals on the autism spectrum spend much of their lives being told what we cannot do, instead of what we can do. 

From the first moment of diagnosis, we are given a laundry list of all the challenges that accompany autism, all the things that we will struggle with for the duration of our lives, and the notion that because we have autism, our lives will never have the quality of persons who do not. 

Although I was not fortunate enough to benefit from scientifically validated interventions such as ABA (Applied Behavior Analysis), it and other autism-related services have the potential to help thousands of other individuals on the autism spectrum and their families. Awareness of autism is on the rise, but we need an elected official to stand up and represent us.

I want a politician who is on my side, who listens to my concerns and gives weight to my voice, and to the voices of all people living on the autism spectrum.

I want to know that politicians will work with me and with other self-advocates and professionals in creating and shaping national policies that affect individuals with autism and their families.

I want improving the quality of life for adults and children with autism to be one of the most urgent priorities on our elected officials’ agendas.

In the election, the votes of people with autism and their families will be counted, but it is up to the politicians that we elect to make our votes count."

--

While I personally do not agree with characterizing autism as a "public health crisis," I am glad to have had the opportunity to speak out on autism as a topic that must be addressed by our elected officials. 

Also, I will be doing my best to update this blog with more regularity, as I have a number of projects on tap at the moment that I am excited to share with you all. Please stay tuned!

AHA-NY's Annual Spring Autism Conference

This is me moderating a workshop at AHA-NY's annual Spring conference on Saturday, April 21st at Adelphi University. Although I have moderated conference panels previously, this was my first turn as a room moderator (i.e., the person who makes the announcements at the beginning and end of the workshop, introduces the speakers, and corrals the audience). The speakers were Dr. Stephen Store and Dr. Faith Kappenberg, two people whom I have been fortunate to know for a very long time now.

The subject of the workshop was the implications of the forthcoming changes to the DSM-5--specifically, the removal of the Asperger's Syndrome and PDD-NOS diagnoses, and the implementation of the broader "Autism Spectrum Disorders" diagnosis.

"I'm Not A Model."

I sometimes hear myself saying this, usually in the following context: “I look pretty good today. I’m not a model, but…” And I’m realizing how much it bothers me, that that phrase has become some sort of qualifier.

“I’m not a model.”

Most women aren’t. We aren’t models…we’re us, yet somehow the barometer by which we measure our self-worth, our “good hair” days or “good skin” days or “skinny” vs. “fat” days or whether our butts and breasts are appropriately perky…is models.

I don’t just mean the comparing and contrasting that goes on when you read a magazine (such as Cosmopolitan). That’s an active form of comparing, where you’re consciously processing this printed material and aligning next to your own perceived misshapen bulk.

I’m talking about the unconscious comparing, such as I described above. Deciding, without even realizing it, that the absolute best, #1, top-of-the-line you can be is a model or model-like.

“I’m not a model.”

Today was the day I had an epiphany regarding that phrase. Today I realized how utterly absurd it is, in any and every context. I’m not 5’11”, nor will I ever be. I’m not gonna be struttin’ down a catwalk anytime soon, or gracing the front covers of any publications, nor will I probably ever.

So instead of making models my barometer…instead of saying, “Well, I came thisclose to model hot today,” I need to say, “I was a pretty good Me today. Not my best Me, but good. And tomorrow, I’ll try to be an even better Me.”

Because here’s the thing: Even on my very worst days—the days that eat away at me, the days that wrench my insides, the days I want to be over before they start—I still want to be me. If I was a model on my worst days, I could never appreciate or be happy with being me on my best days. So that’s why I have to be me, 24 hours a day, seven days a week, 365 days a year.

I may not always like it. Nobody looks in the mirror and loves what they see all the time, unless you’re Narcissus. That’s just the way the world works. But I can no longer get down on myself for not being or looking a certain way. I spent too many years doing that already, and it’s no way to live.

It’s not living at all, really…it’s existing just for the hope that you someday might escape who you are.

Except I don’t want to escape who I am. Not anymore.

“I’m not a model.”

…But why should I have to be?

Welcome and Some Housekeeping Items

So, I've noticed some new followers on my blog in recent months, as well as e-mail inquiries from readers of this blog. I thought, therefore, that I would take a moment to welcome everyone here and introduce myself and my blog to you.

First, I would like to thank Babble.com for choosing my blog (for the second year in a row!) as one of its Top Autism Spectrum Blogs for Parents. I am very grateful to have been selected and I hope that this distinction will help to bring in new readers. As you may be able to tell, this blog is not updated as regularly as I would like it to be, so I am working to try and change that.

Because of this thus-far irregular updating, I am not completely certain as to who the exact readership of this blog is. I've aimed my writing to be accessible to individuals on the autism spectrum and neurotypical people (friends, family members, parents, professionals) alike. I want everyone to be able to read my entries and take something away from them, no matter where on the developmental continuum they may fall.

So who am I, exactly? And why do I write this blog? Well, I'm a woman who was diagnosed with Asperger's Syndrome at the age of 10. In 2009, while pursuing my Masters degree in Applied Behavior Analysis, I became certified as a college coach for students with Asperger's Syndrome, which is how I am now hoping to make my living. Upon completion of my degree in 2011, I opened an office for my newly-founded college coaching business, A.S.C.O.T. Coaching, LLC, in Fairfield, New Jersey.

I currently serve on the Board of Directors and as the Board Treasurer for GRASP, the Global and Regional Asperger Syndrome Partnership; on the Self-Advocate Advisory Board for the Daniel Jordan Fiddle Foundation; and on the Communications Committee for Autism Speaks. Through the work I do for these organizations, and through my work as an Asperger's consultant and public speaker--speaking at conferences, professional development workshops, and assemblies across the country as well as at the United Nations last year--I am able to act as a voice for individuals on the autism spectrum who do not have one.

I'm also writing a book at the moment, titled The Naughty Autie. It details my experiences as a woman on the autism spectrum with dating, relationships, and sexuality. I've been referred to as "the Aspie Dr. Ruth" because of my willingness to speak frankly and openly on issues of sexuality and relationships. The book takes on a "single girl," Sex and the City type of perspective that is unique to the current autism literature base, with me as the "Carrie Bradshaw" of the Asperger's world. I do not have a publisher for the book as of yet, but I am currently looking for one.

I've been a writer since the age of 10, starting with poetry, then later branching into short fiction, and now non-fiction. My writing has been published in a number of outlets, including the official blog of Autism Speaks, Autism Spectrum Quarterly, AHA's On the Spectrum newsletter, and most recently, the "Transition to Adulthood" chapter of W.L. Heward's Exceptional Children, a widely-read textbook for undergraduate and graduate special education students.

My primary area of interest is working with college-age individuals and adults on the less affected end of the autism spectrum. For my Masters thesis, we were required to design and run our own research study using the principles of ABA. For my study, I taught adult men with Asperger's Syndrome how to ask someone out on a date. As I build and cultivate my business, I hope to continue this work and offer dating skills workshops for both men and women with Asperger's Syndrome.

What you will find on this blog is a collection of my ruminations about situations with which I am dealing, announcements about events that I am involved with, and my reactions to news items related to and issues being faced by the autism community as a whole. I have also been approached for book reviews and author interviews, so look for those to potentially become a bigger feature of this blog as time goes on.

For more information about me or about A.S.C.O.T Coaching, I invite you to check out my website, www.amygravino.com. Several of my media appearances, including my talk as a member of a panel of autism experts at the United Nations last year, are featured on the Media page of my website.

Any questions, comments, suggestions, or speaking/PR inquiries can be directed to me at amy@amygravino.com, or to my business manager, Nicole Turon-Diaz, at learningbydesign@verizon.net.

Thank you so much, and I hope you have enjoyed, continue to enjoy, and will enjoy my blog for a long time to come!