Vexed by Vaxxed: Autism, Vaccines, and the Epidemic of Ignorance

It's only a few days into 2016's Autism Awareness/Autism Acceptance Month, and despite how much progress has been made over the past year, I have already come face-to-face with evidence of how much work still needs to be done.

As most folks probably know by now, the controversial documentary Vaxxed! was slated to be screened at the Tribeca Film Festival later this month, at the behest of the festival's founder, Robert De Niro, who is a parent of a teenage son on the autism spectrum. Shortly after defending his decision to screen the film, De Niro announced that Vaxxed! would not be shown at the festival after all, saying that he had reviewed it with experts in the medical community and that "[...]we do not believe it contributes to or furthers the discussion I had hoped for."

The film, which was directed by discredited researcher and anti-vaccine progenitor Andrew Wakefield, has provoked an incredible backlash--first from the scientific and autism community when it was going to be shown at Tribeca, and then backlash from the anti-vaccine movement when it wasn't. Yet the comments and attitudes of those who are anti-vaccine have proven for me to be some of the most disturbing and misinformed that I have witnessed.

This culminated in my seeing a Facebook post from Vaxxed! producer Del Bigtree (how is that even a real name?) and a response to a comment on that post, which I have screencapped below:

(Source: Del Bigtree Facebook post)

When you create a narrative of autism that centers almost entirely around young children, this is the result.

When you promote an agenda that says autism is caused by vaccines, that ignores the presence of autism throughout history, insisting it is something new that didn't exist twenty, thirty, forty years ago so therefore only affects children, this is the result.

Adults with autism are right where we've always been: Here, among you, living our lives to the best of our ability, trying to survive in a world that neither understands nor accepts us.

We are here now as much as we were in times past; the only difference is that twenty, thirty, forty years ago, you didn't see us. You couldn't, because we lived in institutions, placed there by our families who were told to lock us away, forget about us, and move on with their lives. Autism was "childhood schizophrenia," mental retardation, "manic depression,"...every diagnosis but what autism actually is, because for so many years, it was neither understood nor widely recognized.

So we suffered in silence. Alone. But we were there.

Today, knowledge of autism is greater than ever before. It has entered and become affixed to the popular global consciousness, and specialists and providers trained in the assessment and treatment of autism spectrum disorders are in overwhelming demand.

But autistic children do not exist in a vacuum. They will grow up, age out, have different needs and challenges as they get older, for which society remains woefully unprepared. Yet the single greatest resource for helping these children is still the most untapped one:

Autistic adults. We who offer both caution and hope, because we know firsthand what it means to navigate the perils and pitfalls of being autistic in a neurotypical world.

It often seems that becoming an adult with autism is never presented as an option to children of anti-vaccine parents, and it is these children for whom I feel the greatest sympathy. Children who hear themselves described as "vaccine-injured" or "vaccine-damaged."  Children who hear these sentiments over and over again, and who start to see themselves as exactly that:

Broken. Less. A toy in need of a factory reset.

But individuals with autism are not objects; we are human beings with personalities, passions, strengths, and challenges that are both tied to and so much more than our neurology.

It is this viewpoint that I would like to see represented at events like the Tribeca Film Festival and other Autism Awareness/Acceptance month celebrations. We must recognize and prioritize common sense and rational thought, rather than fear-mongering and hysteria-based rhetoric.

I want anti-vax parents to stop searching for the 'normal' child they think is missing and start looking at the autistic child that is right in front of them.

It begins with education. It begins with denying a platform to those whose words and ideas would promote ignorance and ultimately cause harm individuals with autism and their loved ones. It begins with raising the voices of those who are working to affect positive change, those with stories to tell and wisdom to dispense.

Change your own perceptions of autism, of what it means to be autistic, of what the possibilities for autistic children are, and of what we can do to ensure a better quality of life for all individuals with autism.

It begins with you. It begins today.

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.

Hypocrisy Rising: Why Children With Autism Don't Matter to Alec Baldwin

EDIT 3/2/11, 2:32 PM: To clarify, the purpose of the piece is actually not meant to have anything to do with Alec Baldwin, but to use the example as a lens through which to examine the systematic devaluing of people on the autism spectrum. That was truly my intention. I am aware that disability is a serious thing, as I do have Asperger's Syndrome and have struggled for most of my life just to survive, let alone thrive and experience happiness. I am not trying to make light of anything nor present this as a gossip column, as that is the last thing I would want to do. The first half of the piece is meant to draw people in and keep them reading to the second half, which is where my more salient points are. But, according to some, it seems I missed the mark here, and for that, I apologize.

In 1996, the world was a very different place. Mel Gibson--pre-Passion, pre-anti-Semitic, misogynistic drunken tirades--was still a bankable Hollywood movie star. Rene Russo had yet to disappear off the face of the planet, and it was at this time that these two starred together in a movie called Ransom.

The plot of Ransom is simple (spoilers ahead): The wealthy owner of an airline (Gibson) and his wife (Russo) have their son kidnapped from them and held for ransom by an extremely crooked cop (Gary Sinise). When things go awry with the attempted payoff, Gibson's character decides to turn the tables and offers the ransom money as a bounty on the kidnappers instead.

Recently, I managed to catch a glimpse of the film on TV, and after watching it, did what I often do after seeing a movie I haven't seen before: I went to IMDb (The Internet Movie Database) to read about it. One of my favorite sections to peruse is the Trivia page, so that's where I went, and it was there that I came across the following: "Ron Howard's first choice for the role of Jimmy Shaker was Alec Baldwin, who turned it down due to the sinister nature of the character as well as the film's theme of endangering a child."

On the surface, this seems totally innocuous. Good on Alec Baldwin, would be most people's reaction, for passing on a role that he didn't feel comfortable with, and for such a noble reason as the endangerment of a child. But just two years later, in 1998, Mr. Baldwin accepted a role in a movie called Mercury Rising, with Bruce Willis. The role Mr. Baldwin took on was that of the villain. In the movie, a child cracks a top secret government code, and the government decides to have him killed. Thus, the theme of the film Mercury Rising...is child endangerment.

Why the sudden turnaround? What possible difference could there be between the two movies as to warrant such a change of heart? Both involve violence, both put the welfare of a young child in danger. Both have villains who could be considered cold-blooded, two-faced, and very unpleasant. So where does the difference lie? Maybe the the devil wasn't in the plot, but in the details.

Maybe the difference was that the child in Ransom was a typically developing child, and the child in Mercury Rising...was a child with autism.

In Ransom, the villain has direct contact with the endangered child, and is actually the one who physically harms him at times, though this is never seen on-camera. In Mercury Rising (a very ironic title for a movie featuring a child with autism), the villain is the one pulling the strings, but not the one doing the leg work. Assassins trail the boy and seek to kill him, while the villain strolls about in his wine cellar while throwing soirées at his luxurious home.

Perhaps, then, it is much easier to accept the endangerment of a child when it is not going on right in front of you. When it is not your hands wielding the weapon that is meant to be used to exterminate the child's life. Or when the child is too "disabled" to know what is really going on. Why else would the endangerment of a neurotypical child disturb Mr. Baldwin, yet the endangerment of a child with autism leave him unfazed?

Of course, Alec Baldwin does not have the greatest track record with autism, either. In 2007, at the Golden Globes award show, Mr. Baldwin and several other stars of NBC television programs were seen wearing blue autism "puzzle piece" pins on their lapels.


Clockwise, from top: Alec Baldwin, Masi Oka, Steve Carell, and Tina Fey.

Mr. Baldwin took home an award that night, and spoke at a press conference afterward. Undoubtedly, the question he was most frequently asked was in regard to the puzzle piece pin. This was a great opportunity, both for Mr. Baldwin and the autism community, to really raise awareness, to make a bold statement about autism in front of an audience of millions. Instead, what Mr. Baldwin said was this:

"Uh, Bob Wright, uh, from NBC Universal, is a great supporter of, uh, autism research, and has, uh, works raising money for autism, and this is Bob's, uh, gave us this pin to wear. And as I was mentioning earlier, that when you work for NBC and if Bob Wright had asked us to wear a hubcap on our lapel, um...I'd be wearing a hubcap right now, because we are working for Bob right now."

(Full video here: http://www.youtube.com/watch?v=2tFrCdVMMY4M. The above part is at the beginning.)

In another interview, Mr. Baldwin actually stated that he "had no idea" what the pin stood for, and that his boss "made him wear it." Maybe his insensitivity to autism shouldn't come as a surprise, given that this is the same man who, in recent history, referred to his own daughter as a "thoughtless little pig." But his apathy and his ability to see the endangerment of a child with autism as different from that of a neurotypical child speaks to a greater issue, one that is endemic to society at large: the devaluing of the lives of people on the autism spectrum.

It starts out as something simple: Always being picked last for kickball. Sitting down to eat lunch and seeing everyone move to a different table. Slowly, these little incidents add up, until, without realizing it, your life doesn't belong to you anymore. One day, you wake up, and life has turned into The Price is Right. Everyone has a tag, and you look down at yours to find out what you're worth. The thickly drawn "0" with a dollar sign next to it is your answer.

I spent the first twenty years of my life believing that I was worth less. That I didn't matter as much, or even at all, because I was different, because I did not fit in. Because I have Asperger's Syndrome. I have seen others on the autism spectrum treated in similar ways. Their contributions in the workplace viewed as less. Their social standing viewed as less. Everything that makes up them as a person, as a whole, viewed as less.

One of the hardest moments in life is when the people who are meant to protect you fail in that capacity, for those same reasons. I remember the blind eyes that teachers turned towards the bullying and teasing that I experienced. Maybe they thought it would stop on its own. Maybe they thought it was just "kids being kids." Or maybe...I wasn't worth it. So many students in the halls; so many far savvier than I, far more able to "play the victim" and garner sympathy. Maybe I just didn't strike the right chord.

The weight of that dismissal carries on through the years. Even though now, as an adult, I do not believe I am worth less, I have seen how those who work closely with individuals on the autism spectrum speak of those whom they are treating. Not necessarily viewing them as less, but as different. These are not children; they are "children who have autism." Every achievement they have, every milestone they reach, will always be measured by that barometer. It'll never be, "Check out that kid, look what a great job he/she did!", but "Check out that kid, look what a great job he/she did, especially for a kid who has autism!"

Every person is a person who is able to achieve things based on their own ability, to the best of that ability. The moment we start looking at individuals on the spectrum as persons who are capable of real accomplishment--accomplishment without qualifiers, without comparing them to neurotypical individuals or even other individuals on the spectrum--is when the stigma of "different" will finally begin to fade.

By eliminating the emphasis that is placed on autism spectrum vs. neurotypical, high-functioning vs. low-functioning, the value of people on the autism spectrum will be fully realized. The notion that a person with autism is like a parcel one receives in the mail that comes damaged, whose value drops significantly because it is "defective", will be a thing of the past. And people on the spectrum, whose identities and sense of self have all but been held ransom by these barriers, will come to view themselves in a different light. A better light.

A light where disability doesn't mean less.

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.

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."