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.


  1. hey nice post mehn. I love your style of blogging here. The way you writes reminds me of an equally interesting post that I read some time ago on Daniel Uyi's blog titled How I Was Able To Control The Feeling Of Restlessness .
    keep up the good work.


  2. Amy, as usual, you are eloquent beyond your years. Never give in or up.