For several months now, I have been struggling with how to write this.
I had hoped that I would never feel the need to do so, but over the past few weeks in particular, I have received random messages on Facebook and tweets from people telling me not to support Autism Speaks. These faceless message-senders are strangers, folks to whom I have never before spoken, but who feel the need to step into my space and tell me what to do. That is something of a problem, if for no other reason than because my relationship with and feelings toward Autism Speaks are far from black-and-white.
First of all, let me be clear from now on one thing: This is not a “defending Autism Speaks” post. I have seen numerous posts circulating on sites such as Tumblr talking about how Autism Speaks is "evil" and no one should support them. The truth is, the grievances that some people have against
Autism Speaks are absolutely justified, and I am in no way here to
diminish their experience or tell them they aren’t allowed to feel
what they feel. In fact, I am on the autism spectrum myself (diagnosed at
age 10), and have been appalled by many things that Autism Speaks has
done over the years.
So that is why, when I was invited to join the Communications Committee of Autism Speaks three years ago, I said ‘yes.’
Huh? Wait a minute…what? you may be asking yourself right
now. The reason that I accepted this position is because in the course of being
aghast at many of Autism Speaks’ past actions, I also realized that they have an incredible platform, a place of visibility in the neurotypical world that is
unmatched by any other autism organization. The enormity of Autism
Speaks also means that—as much as many of us wish otherwise—they are not
going away anytime soon.
I joined the Communications Committee (which deals with the public campaigns and partnerships of
because I saw it as an opportunity to make changes to Autism Speaks from within.
Has progress been made over the last three years? Absolutely. Has enough progress
been made? Sadly not. But it is a slow process—so slow, sometimes, that
it’s unbelievably frustrating. One important thing to note, however, is that the people with whom I am in contact are in no way supportive of the
“cure” rhetoric that was the previous trademark of Autism Speaks. That
was a mindset that came with the organization’s founders, but to which very few of the people there still subscribe.
It’s not enough that I know that, but the public overall does not. That change has
not trickled down, has not shown in much of the media put forth by Autism
Speaks. And that is one of the things I am trying to make happen by being on this committee.
When I sit there in the committee meetings, it becomes my job to operate as the eyes and
ears of the entire autism community. It becomes my job to be the voice for individuals on
the spectrum, a task that is in no way easy because I know that not
everyone is coming from the same place that I am, nor has everyone's experience with autism has been the same as mine. But I am in
there to speak for you, to make your concerns—which are also my
The simple truth, and the one thing that I always try to keep in mind, is this: They’re not going to hear it if I’m not there to say it.
My reputation with Autism Speaks has become one of being the person
who will not sugarcoat things, who will not hold back, and who will be
tough on the organization because I know that it can and should
do better. I have met and spoken to Autism Speaks’ executive director, Liz Feld, herself, and told her as much. I have also purposely gone to
Autism Speaks events where there are big donors in attendance to make
sure that no one loses sight of who they and Autism Speaks are supposed
to be helping: People on the autism spectrum.
As I have stated previously, it is my belief that working from within is the best way to effect
change. I hope that by using the capacity I am afforded as a member of the Communications Committee, I can create an
honest and open dialogue about the concerns, grievances, and needs of
the autism community with Autism Speaks, and by doing that, change can and will happen.