Russian To Conclusions: The Problem with Diagnosing Vladimir Putin with Asperger's Syndrome

This morning, I received a message on Facebook from a friend: "Did you see this?" along with a link to a news story from USA Today. It stated that a study conducted by a Pentagon think tank in 2008 concluded that Russian president Vladimir Putin has Asperger's Syndrome.

Now, after reading the article, as well as numerous posts and comments online in response to it, all I can think is:

The president of Russia has Asperger's Syndrome? You're Putin me on.

There are a number of problems with diagnosing (however roundabout-ly) any world leader with Asperger's Syndrome, never mind one who has as abysmal a human rights track record and history of sociopath-level cruelty and indifference to his own people as Vladimir Putin. 

Right out of the gate, the report on the study says the researchers can't prove that Putin has Asperger's because they were unable to perform a brain scan on him. So it makes you wonder what the aim of running such a story could be, if not to provide something definitive.

What this really is and was is a shot fired. Wars happen not only with guns and bullets, but with words and propaganda. So the shot that was fired in this instance is reminiscent of a Cold War tactic: Discrediting the enemy by saying that he has Asperger's Syndrome.

And therein lies the problem: Whether the researchers intended such or not, Asperger's Syndrome is being used an insult, a reason why Vladimir Putin makes the terrible decisions that he does, and why he should be viewed as an ineffective leader. The equation then turns to this:

Vladimir Putin is evil. 

Vladimir Putin has Asperger's Syndrome.
Asperger's Syndrome is evil.

It may seem like a far leap to those of us who live in and understand the world of autism and Asperger's Syndrome, but it is not difficult to lead those who are unfamiliar with Asperger's down that path. It is a path already begun with Adam Lanza and the Newtown killings in 2012, and carved out further with every subsequent mass shooting where the perpetrator is immediately described as having Asperger's Syndrome--regardless of whether it is true.

With every unfounded assertion, every assumption and negative media portrayal comes a mountain of discrimination and fear from under which we must repeatedly climb. And when you start to feel as though no one cares if you get out, the weight of that mountain eventually becomes unbearable.

Individuals with Asperger's Syndrome are artists. Writers. Mathematicians. Engineers. We view life through a different lens, and if properly supported and nurtured, can use that vantage to better ourselves, our communities, and the world at large. But if we are continually associated with people like Vladimir Putin--associated with psychopaths, with those who are to be feared, with evil--those opportunities will never come. 

Let us hope that media outlets will consider taking a more responsible tack in reporting stories such as these from now on, because it is not just the United States' relations with Russia or public opinion that is at stake.

The lives and futures of individuals with Asperger's Syndrome are at stake. And we deserve better.

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."

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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!

The Biggest Day of My Life (So Far)

On Wednesday, April 6th, I had the distinct honor and privilege to sit on a panel at the United Nations in New York City. It was an event co-sponsored by Autism Speaks and the Permanent Mission of Bangladesh at the United Nations, dedicated to raising awareness of autism and addressing related issues in different areas.

My job was to be the "human" face on the subject, to remind the audience and the other panelists that, first and foremost, we are dealing with people here. Not statistics, not figures, but fellow human beings. The other panelists were Dr. Geri Dawson, Chief Science Officer of Autism Speakers; Prof. Saima Wazed Hossain, Chair of the National Advisory Committee on Autism in Bangladesh and daughter of the Prime Minister; and Dr. Shekhar Saxena, Director of the Mental Health division at the World Health Organization.

As I sat on a couch in the Bangladesh Mission before the event, I kept wondering how it was that I got there. A series of chance encounters, made connections, coincidences, taken opportunities, and plain old luck seemed to be at work, all in combination. My family, my friends, everyone who believed in me in my life, are all what I felt like propelled me to the place where I am now, the place where I would be invited to be a part of something like this.

I could say so much more on the subject, but I would very much like to show you all the video of the event, so that you can see for yourself what it was like. The entire event is in the video below, and my portion of the panel starts at the 1 hour, 8 minute mark. I hope you enjoy it!

Autism Speaks "Light It Up Blue" Blog Post

I was recently asked to write a blog post for Autism Speaks' specially created "Light It Up Blue" blog dedicated to letters addressed to the President to get the White House to participate in this campaign on April 2nd, World Autism Awareness Day.

This post was originally published on the Light It Up Blue blog here.

~*~

"Dear Mr. President and First Lady Michelle Obama,

Every year, the same day comes. Crunch! go the crisp leaves under your feet, twirling around in the cool, late autumn breeze, before coming to land on the earth below. Children race from house to house, their sneaker-covered feet thumping across the pavement, waiting for the door to open, to see the face of whoever lives there, voices ringing out in a choir of “Trick or treat!” when the moment finally arrives.

I am, of course, talking about Halloween: the time of ghosts, goblins, bobbing apples, and mini-sized candies filling up plastic buckets across the nation. And with the spirit of frivolity and mischievous fun also comes words of caution, issued forth by parents far and wide. From elementary school onward, every kid knew the most important Halloween rule of all: Never go to a house that doesn’t have any lights on.

A light is a symbol of welcome. Come, the light says. This is a safe place. For centuries, a lantern hanging outside of a building meant hospitality, and a darkened establishment meant emptiness—a place to be avoided. Today, we still have lights on the front of our houses, and when we know company is coming, it is often custom to leave the light on.

For individuals with autism spectrum disorders, however, the houses we encounter—be they school, a disability service center, even the place we supposedly call home—are often dark. We have been outcast, shunned, bullied, pushed around by a system that itself sits in darkness. There is no welcome for us, Mr. President. Time and again, we look for the light on the front of the house, and it is nowhere to be found.

Too often, people on the autism spectrum spend their entire lives in these dark houses. We have met rejection even at the hands of our own families, whose inability to understand our diagnosis and who we are leads to prolonged emotional and social isolation—a painful reminder of how much we don’t fit in, even with those whose blood we share.

And yet, with our honesty, loyalty, and compassionate natures, the houses we build as adults stay lit. We grow up; we find our way in this world that is not built for people like us, persevering, and despite the pain we have felt and the heartaches we have suffered, we let others in, not wanting them to face the same dark houses in which we once lived.

It is for these reasons and so many others, Mr. President and First Lady Michelle, that I am asking you to light the White House blue on April 2nd this year, in honor of World Autism Awareness Day. Our voices have typically not been those that are heard in the arena of politics, but with a single action, this can change . By taking part in this campaign, you will bring hope and encouragement to countless individuals on the autism spectrum and their loved ones. Stand with the autism community, and let your commitment to our cause shine bright.

Let your house be one with the lights on."

- Amy Gravino
Self-Advocate, Writer, Asperger's Syndrome College Coach

My Day In Court: Testifying in Favor of an Autism Insurance Bill

I would like to apologize to all of you. I meant to write about this months ago, but it seems that time got away from me. Better late than never, though, right?

On May 14th, 2009, just days before I began my first class of the summer, something downright remarkable happened. I received an e-mail from Leslie Long, who works for Autism New Jersey, an autism advocacy organization here in NJ. She told me that there was an Autism Insurance Bill (A2238) up for approval in the New Jersey State Assembly Appropriations Committee and Senate. The purpose of the bill was to have insurance companies pay for medically necessary evidence-based treatments for autism (such as ABA) and other related services that most families pay for out-of-pocket right now, and many have even gone bankrupt because of trying to pay for these services (many of which can cost upward of $50,000 a year). The hearings were to take place the following Monday, the 18th of May, and she wanted to know if I would be willing to testify in favor of it!

This, of course, seemed like a very worthy endeavor to me, even though the bill only covered individuals aged 21 and under. So, I agreed to testify. Dan (my roommate) and I got up bright and early that Monday morning, and together we drove down to Ewing, a town right next to Trenton, which was where the state annex was located. I left my car at Autism New Jersey's headquarters, and the two of us, along with Barbara Wells (who also works for ANJ) headed to Trenton in Barbara's car.

I was struck by the atmosphere as I walked into the courthouse, signing my name in the guestbook and affixing a temporary "Visitor" badge to my lapel. More members of our group began to filter in--whom I recognized immediately because we were all dressed in varying shades of red, the chosen color for the cause and ANJ--and we stood outside the Senate hearing room chatting and mingling. One woman from Autism Speaks was handing out "Vote YES on A2238" buttons for people to wear, and both Dan and I took one and proudly pinned them to our jackets.

A few more minutes passed, and after Leslie Long couldn't get ahold of an unavailable senator to whom she had wanted to introduce me, we all went up to the Assembly Appropriations Committee hearing room. The doors to the room were the first thing that I noticed--they were tall, black, and heavy, and somewhat resembled the doors to the kitchen in the movie Ratatouille. The red patterned carpet also caught my attention, so bright and busy that it was like being inside a casino. I made my way up to the front row, along with Suzanne Buchanan, with whom I would be testifying.

When Leslie contacted me, the first thing I asked was, "What should I say?" After all, nothing would be more valuable than the words I chose for my testimony, and whatever I said needed to be concise, as there would be only a brief time for me to speak. I remembered my Letter to My Younger Self, and I decided that that would be the perfect thing to read as my testimony. I sent it to Leslie, as I was sure we would need to modify or abridge it somehow due to the time constraints. She read it aloud as we were on the phone, and said to me, "You know what? I can't think of a thing to change. Leave it just as it is."

So, I did, and only shortened the introduction that I'd written to the letter. I sat there in that courtroom, clutching it in my hand, and was so nervous, unsure as to whether it would win the Assembly over. I felt especially anxious as I cast a glance over at Suzanne's testimony, all neatly spaced and professional-looking on a crisp page of paper bearing the Autism New Jersey logo and letterhead. I crossed my fingers, hoping that I would be taken seriously, even though I didn't have custom stationery or the credibility that comes with it.

Another bill went up for debate first, just to bide time until everyone related to the A2238 bill had arrived. The first person to testify was Bob Wright, co-founder of Autism Speaks. The Speaker of the Assembly, Joseph Roberts, had asked Mr. Wright there to deliver testimony of his own, based on his experiences with his grandson. After him was Assemblywoman Joan Voss, who has an adult son with Asperger's syndrome. Ironically, I am a member of the Asperger's Syndrome Advisory Board for the Daniel Jordan Fiddle (DJF) Foundation, and her son is also on the board.

After Assemblywoman Voss finished speaking, Suzanne and I were up. Suzanne went first, and I listened carefully as she recited her prepared speech. Once she was done, the Chairwoman asked if I had anything to add. Her phrasing momentarily gave me pause, as it sounded like I was merely meant to be a follow-up to Suzanne's testimony, rather than giving my own separately. I disregarded the thought, however, and began to read my Letter.

I did not realize this at the time, as I was intently focused on quickly reading the letter, but Dan later told me that the room was completely quiet when I read. When others had given testimony, people were still talking--assistants to the committee members were walking back and forth from the table, things like that. But there was not a word spoken by any of them as I read. Dan also said that he saw people crying softly during my testimony, so moved were they by my words that it brought them to tears. I was floored when he told me all of this, amazed but in a very happy way.

The one distinct memory that I do have, however, is when the Chairwoman interrupted me about three-quarters of the way through the letter, saying that testimonies needed to be short due to time constraints and that, while she appreciated what I had to say quite a lot, that (more or less) I needed to hurry up and finish. So, I skipped one paragraph in the letter, which enabled me to reach the end more quickly.

I made my way back to my seat afterwards, and several people turned to me, their hushed voices warmly saying how much they'd enjoyed what I said. To my surprise, the Assembly voted on the bill right then and there! They went around the table asking each assemblyperson for his or her vote ('yes' or 'no'). When one woman gave her vote, she stopped to say, "And I'd just like to say to Amy, thank you so much for what you said. Your letter was beautiful." I got a personal shout-out during the vote, which was completely unexpected, but so nice.

Once the votes were tallied, we were all thrilled to discover that the bill had passed! Victory was ours! What a feeling indeed. We all hugged and embraced one another, delighted and relieved that all of our hard work had paid off.

It was, however, a somewhat bittersweet moment for me, because I knew in the back of my mind that this battle is far from over. Adults with autism and autism spectrum disorders still don't have insurance coverage--even if they did, there really aren't any services for the insurance to cover in the first place. I am proud to have been a part of this moment in history, to have contributed in the way that I did, but I know what lies ahead, and I hope that we adults will have just as many people fighting on our side as the children did.

I often feel as though many government offices and social services departments seem to think that autism and Asperger's syndrome are "childhood disorders." As if these individuals will somehow magically grow out of autism when they turn 18. But we all know that this is not the case. The fact of the matter is, autistic children are one day going to become autistic adults, and what will happen to them then? Many end up in group residences, or live at home with aging parents who will one day not be able to take care of them. Something has to be done about this.

What will the government do when millions of autistic children turn 18? Act as if they don't exist? The one true kernel of wisdom in passing this bill is that it seems as if people are starting to realize that it is better and far more sensible to pay for services now, so that these individuals can grow up to be productive, contributing members of society, than to wait until they are adults and pay then...pay for them to stay at home, without jobs, without anything, draining away their family's money.

This, of course, does not do much to help the adults who are here right now, who are struggling to find and maintain employment, to make and keep friends and develop romantic relationships. I have found myself become a voice for adults on the spectrum, especially now that I am starting my Master's thesis, in which I have to design and run a study using the principles of applied behavior analysis to teach a skill.

I think about adults on the spectrum all the time, about all the challenges they (we!) are facing, and what I can do to make things better. Testifying in favor of this bill was one step in that direction. I know that if I continue my work, write my book, (eventually) become a college coach for individuals with Asperger's syndrome, those will all be big steps in that very same direction. Having been a part of this democratic process and seeing it in action has inspired me to keep up that good fight. And I hope you all will, too.