Thursday, December 26, 2013

Post-Christmas Reflections

The last embers of the holiday are still dying down, and I have gathered in their glow to collect my thoughts on the day's events.

This Christmas brought with it an ending, and many new beginnings as well. Ever since I was a little girl, I have written a letter to Santa every year on Christmas Eve and placed it on the kitchen table with a plate of cookies and an empty glass for milk. And every Christmas morning, without fail, I would turn the paper over to find a handwritten response from “Santa” (my dad). I’ve continued the tradition on for symbolic purposes, but after a great deal of contemplation, I decided that this will be the last year for the letters to Santa.

I knew that I wanted to send the tradition off with affection, and after searching through family photo albums, found this picture of my father and me from when I was a child:

Dad and his little girl, 1988.
I was able to scan the picture, then edited it to look like a Polaroid picture, put it in a Word document along with my final Letter to Santa, and placed it on the kitchen table for him to find.

Yesterday, I attended two family Christmas gatherings, and in both instances, was the only person present who was not part of a couple (married or in a relationship). I (literally and figuratively) stood outside of my relatives, watching and observing their interactions, and realized deep down that I am different from them, and I always have been. In the past, I thought that my being different meant that I was less, somehow; that I did not deserve to be related to them. But what I now know, through wisdom and experience, is that I can be different from them, and we can still be family.
That is what Christmas is: Finding a place where the people that you love become the true bearers of comfort and joy. All through the day, I could feel the presence of those who have passed on—Grandma, Grandpa, great-Aunt Lollie, and more—and I know that they have also been folded into the fabric of Christmas. The fact that I knew them and loved them is a greater gift than anything inside ribbon and bow-festooned boxes sitting under a tree.
In many ways, a letter to Santa isn’t so much about presents, but having just the briefest moment to have someone listen to what you have to say. I yearned for that as a child, thirsted for it…but now, my cup is nearly overrun. It happened gradually—Christmas by Christmas, in tiny, tiny increments—but the letters have fulfilled their purpose, and though they and Santa will always be in my heart, I am honored to say a quiet, respectful goodbye.
Farewell to one chapter of life. Onward and upward to the next.

Thursday, December 12, 2013

A Response to "An Open Letter to Autistic People Who Support Autism Speaks"

[This blog is a response to this post from Queerability, in which myself and other individuals on the spectrum were specifically called out for our affiliation with Autism Speaks. I advise my readers to view the above post first before reading my response below.]

Before I begin with this post, I'd like to state for the record that I can speak only for myself and to the experiences that I have had since I started working with Autism Speaks. Those of us who have been involved with the organization will each have a different perspective on it, so what follows are my views, feelings, and thoughts, and do not represent those of any other self-advocates.

From elementary school through high school, I was bullied almost incessantly. Typically by one particular girl and her group of friends, but other kids were not shy about joining in from time to time. They saw how I acted--my social difficulties and the sensory challenges--and what it all added up to was one very strange little girl wandering those hallways. 

But the picture they saw was incomplete. There was so much more to me than that. More than what they were glimpsing in those few, brief moments. More that they never ended up seeing because they didn't bother to look closer.

As I've gotten older, I've come to realize that this is quite true for a whole lot of things.

When I first began working with Autism Speaks, I remember having a distinct awareness of the polarizing presence that they had and have in the autism community. I had heard so many horror stories and read so much negativity on various pages and forums on the Internet, and it made setting foot in their NYC headquarters for a meeting to which I'd been invited feel not unlike walking into the belly of a very large beast.

As time went on, I developed connections with people who worked for the organization, and was surprised by the contrast that existed between these individuals and the portrayal of Autism Speaks that I had previously read. They saw my opinions as valuable, listened to my words, and I began to believe that having this connection provided me with a golden opportunity to help others who are on the autism spectrum.

I also had opportunities to raise my own profile in the autism world. Two years ago, on World Autism Awareness Day, I was invited to speak on a panel at the United Nations in New York City. I was the only self-advocate on the panel, and of the four speakers, my speech received the longest amount of applause. Simply put, that would never have happened without Autism Speaks.

In the last few years, criticism of Autism Speaks has continued to rise. I have found myself troubled at times with what all of this means, and whether I am right to be involved with the organization at all. Time and again, I have seen posts on Tumblr and Facebook about the terrible things that Autism Speaks has done, and each post has further fueled the fires of my continued inner anguish.

But things are never as simple as we would like them to be. So many of these posts make things come across as very black and white--good vs. bad, light vs. dark, and so on. In reality, however...there is an incredible amount of grey.

In 2011, I was invited to take a volunteer position on the Communications Committee of Autism Speaks. I did so because I believed it was a great opportunity to represent individuals on the spectrum, and to work from the inside to make changes to the organization itself.

It has always been my belief that working from within is one of the best ways to cause change. I believe change is possible because I have seen it, because the people with whom I have contact do not subscribe to the views of those in the higher up levels of the organization. I have seen the strides that Autism Speaks has made in the last few years because those people were open to hearing what I had to say, and I know change can and will continue to happen.

Within the Communications Committee, my task is an unfathomable one, and that is to speak for untold numbers of people on the spectrum. To the best of my ability, I represent them, make damn sure their voices and concerns are heard, and try my hardest to ensure that the public campaigns of Autism Speaks reflect that.

It is not easy.

I am also involved with other autism organizations to varying degrees, including being a member of the Board of Directors of GRASP, and so I know the difficulties that have arisen when attempts have been made to create a dialogue with Autism Speaks.

I know that there is a massiveness, a “bubble” around Autism Speaks that, because they are so highly visible, clouds their ability to see others around them. I know it creates denial when something is wrong, or when there is a problem, and that is why I have continued to stay on the committee: To be that voice that they would otherwise never hear.

When John Elder Robison resigned from his positions with Autism Speaks, it shocked me. The criticism that I received in the wake of his resignation took me aback more than I imagined possible. I have had my decision to continue working with Autism Speaks compared to being in an abusive relationship—an analogy that is extremely problematic, not to mention damaging to actual victims of abuse. I've also been accused of being "bought" by Autism Speaks, a statement that would be much more insulting if it were not so completely ludicrous.

The common link in both of these is the questioning of my integrity, and the implication that I am being manipulated by those around me. I've been the victim of manipulation in the past, that much is true. Being on the spectrum, I've often been in a far more vulnerable position than my neurotypical counterparts. But for people who do not even know me to cast such aspersions on my character is something I simply cannot understand. The decisions I have made have always been mine alone, and are not the result of undue outside influence. I am not a puppet of Autism Speaks. I speak for myself.

While I can most certainly understand people on the autism spectrum taking issue with Autism Speaks as an organization, I was rather disturbed to be called by name in the "Open Letter." I have never concealed my affiliation with Autism Speaks, and am willing to openly discuss it and any concerns people might have if I am contacted privately.

To call me and others by name, however, is to give people a target at which to aim, and it is how witch hunts (even virtual ones) get started. It is also worth noting that calling people out in a post does little to bring about sympathy for someone's cause, because if those people do become targets, they will end up being far too busy looking over their shoulders in fear of an attack to help you out very much.

Autism Speaks is a massive presence in the autism world, and they are not going anywhere. They are also very far from perfect, and I believe the best course of action is to work with them, because no one can move a mountain with their bare hands. Sometimes the process is unbearably frustrating; still, I push on and continue to remind Autism Speaks that I and others on the spectrum are a force to be reckoned with.

In the days following his resignation, I spoke to John Elder Robison and told him of my concerns and personal struggle with being involved with Autism Speaks. Much to my great surprise, he expressed support for my decision to continue acting as a member of the Communications Committee, and said,  "Amy, I encourage you to stick with the communications work. I still believe in change from within."

But it cannot happen if I am and others on the spectrum are not there to help make it happen.

Thursday, November 14, 2013

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.

Friday, August 16, 2013

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.

Saturday, March 9, 2013

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.

Sunday, December 16, 2012

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?

Tuesday, November 6, 2012

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.

Wednesday, October 17, 2012

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.

Thursday, September 27, 2012

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!

Friday, April 27, 2012

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.