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.

Thoughts on Depression and the Death of Robin Williams

You came to visit me today.

You sat next to me in Science class, somewhere between kingdom and phylum. Nobody else saw you come in, of course, because you're sneaky. You looked like the boy in the flannel shirt and Reeboks, but I knew it was you.

We're not supposed to talk in class, but you did it anyway. I heard you whispering about the blinds being closed so no light could come in, and how it would always be that dark. But that classroom was always dark, and I couldn't remember when it wasn't.

Suddenly, you were sitting on my chest. I didn't see you move, but I felt you pressing into me, felt the weight bearing down. You told me that eleven or twelve years was enough, that the rest would all be the same, that there would never be anything new or different. Or better.

You were inside my head. I couldn't breathe.

That was the first time that I saw the appeal of the neck-length tape measure wrapped around a hook in the cubby.

---

Earlier this week, our collective hearts were broken and our spirits devastated when beloved comedian/actor Robin Williams passed away. He took his own life at the age of 63, and after hearing the nature of his death, I have started to remember my own experiences with depression and suicidal thoughts, which started when I was in elementary school.

It's not something I have occasion to speak about very often, nor that I particularly like speaking about. The memories, what few of them remain, are too painful to revisit. I've attempted to describe it via the passage above, but the difficult part to reconcile is that this didn't happen just once; it happened over and over and over again, in different settings and to varying degrees all through my school career.

When you are young, you don't fully understand the finality and permanence of death. As the thought of suicide grew in my mind, what I believed was that killing myself meant killing someone that everyone hated, and that if I eradicated that part of me, I would return, somehow, as someone that everyone loved.

To this day, I am still not sure what kept me from doing it. Speaking in practical terms, I couldn't overdose because I wasn't able to swallow pills at the time; I was afraid of blood and sharp things, so that ruled out a slightly more violent end; and I didn't have the necessary fine motor coordination skills to make a noose. It reads like a comedy of errors, but I feel that these obstacles were put in place almost by design. I remember thinking of each of these things as one failure after another on my part. I felt that I was a failure at life...and then I was a failure at death, too.

That was what depression told me.

What it didn't tell me was that I wasn't alone. That there were and are so many others, like Robin Williams, who suffer quietly, wanting and hoping for things to be different, but who feel trapped, isolated, and lost in their despair.

Though I did begin taking Prozac for the depression at age 12 (and voluntarily stopped when I was 15), the cloud only began to lift after I left high school, when--for the first time that I could really remember--people saw me. They saw that I was here, that I existed, and that maybe I was even a good person. Their voices became louder than depression's voice, and at long last, I could breathe again.

I know that I got very lucky.

My story is only one story, and depression affects other people in all sorts of different ways. We have a very long way to go yet when it comes to discussing mental illness and suicide, and the stigma that surrounds these issues will never go away unless we start talking about them.

If nothing else, I hope the death of Robin Williams will be the beginning of this desperately-needed change.

I only wish he could be around to see how it ends.

---
[If you are having imminent thoughts of suicide, please consider calling the National Suicide Hotline at 1-800-273-8255 (in the U.S.), or visit their website.]

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.

Why Kim Kardashian's Shamarriage Irks Me to No End

By now, most folks are aware of the big to-do surrounding Kim Kardashian’s 72-day marriage to (and impending divorce from) Kris Humphries. This has raised the ire of a great number of people, many of whom have been quick to point out what a slap in the face this charade is to couples who want to be together but are unable to, for various reasons. At least some of my own anger towards the situation stems from this, as well as the hypocrisy of the anti-gay crowd that claims gays are "ruining the sanctity of marriage."

But not all of it.

I’m a single gal. I make no big secret of this, nor of the fact that I have not really been dating since getting big-time burned some five years ago. I have watched over the last few years as people I went to high school with, college friends, and family members have jumped on board the Nuptial Express, bound for their destination of wedded bliss.

It is not easy to be a part of an increasingly shrinking number of single folks among my peer group. However, as glum as it may make me on occasion feel, I try my best to push that aside and think of how wonderful it is that my friends and peers have found someone to spend the rest of their lives with. That they have made that special connection and are getting to have this special day on which to celebrate it.

So when I see/hear/read news about someone like Kim Kardashian blowing a mind-boggling $10 million on her wedding and then throwing in the towel not even three months later, it kind of makes me want to break things—preferably the most expensive things that were actually at the wedding, just because.

To be able not only to find the person you’re meant to be with, but to then marry them (if that is what you want to do, of course) is one of the rarest and most beautiful things in this world. Not everyone is fortunate enough to have this happen, and for many people--in particular, people on the autism spectrum, of which I am one--the dream of that one special day, with that one special person, will never amount to anything more than a dream.

I have thought about marriage, more so as I've made my way through my 20s. What it means to me, how I feel about it, and whether or not it is something that is within my reach. For most of my life, I've never thought that it was, in part because I have Asperger's, and in part because I'm me. The only thing I do know is that I don't know if I will ever get married, if only because I am not convinced I will ever find someone who would want to marry me.

It would mean more to me than words could describe if I ever did marry, and I would spend a hell of a lot more time on the marriage part--the part that is supposed to last forever--instead of the wedding, which only lasts until there are crumbs on the guests’ plates and the final notes of the last song are reduced to inaudible reverberations miles away.

I would also respect that there are so many others, including friends of mine, who deserve the happiness I have found but have not yet found it, or who are being deprived of their chance for other reasons. I know that in a marriage, the commitment is supposed to be between the two married people, but I would also be committed to everyone else that I love--committed to honoring all that they have done to help me get to that point, because their friendship and love has shaped me and helped make me who I am.

The icing on the not-quite-so-proverbial wedding cake is being able to afford said wedding. Being able to to truly spare no expense to make it the wedding of your dreams, without having to worry about the cost of this and that and lying awake at night with visions of gardenia bouquets and cummerbunds haunting your thoughts, sweating out of every pore in your body, terrified of exceeding your allotted budget. Peace of mind like that is something you cannot put a price on.

...Unless, of course, you’re Kim Kardashian.

The idea of wasting that money, or of using such an event solely as a ratings ploy, is disgusting beyond all comprehension. It makes what is supposed to be a cherished and significant life experience into something trivial and disposable. The irony lies in the fact that those pretty pennies, so lavishly spent, were spent on an event that has now been rendered worthless.

Deep down, I still believe that marriage is and can be more than what it seems to be now, if only we remember what it’s supposed to be about: Love. Two people in love, sharing that with each other and the world. Making it official. Tying the knot. Taking the plunge. It’s not something you do alone. It’s something you do together—not only on that day, but every day after.

Some news outlets are reporting that Kim and Kris are attempting to “work it out”—while others are painting their headlines with details of prenups and divorce proceedings. As much as whatever has happened between Ms. Kardashian and Mr. Humphries is between the two of them, it involves the rest of us (to an extent) as well, and our willingness to stand by and let this be something that we find entertaining, instead of something we find repulsive.

Maybe that’s all marriage is these days—something you just grab on-the-go, have fun with for a while, and then trash when it stops being fun—the life event equivalent of a drive-thru combo meal. Who knows? Maybe Kim and Kris thought they were signing a rental car agreement instead of a marriage license, and that’s why it only lasted 72 days. Either way, I just hope that their example will most certainly not be one that others will follow.