Tuesday, April 5, 2016

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.