Monday, November 23, 2009

National Town Hall run by Advancing Futures for Adults with Autism

This article was written by an autistic self-advocate who attended one of the AFAA National Town Hall meetings on November 13, 2009, and describes his impressions of the event.

Nothing about us without us.

This is what I thought when first reading about the National Town Hall put on for Advancing Futures for Adults with Autism: this meeting must have the voices of autistics heard loud and clear, especially those of us who are adults and are struggling to live and survive in today's society. What an opportunity to address a part of our population that has long been overlooked!

Then I found out that the organizational chairs of the entire production were the New York Center for Autism and Autism Speaks.

Nothing about us without us.

These words again resonated inside me as I saw that Autism Speaks was playing a key role in this production, reminding me of the numerous discriminatory and prejudicial actions they have taken against people with autism (like myself) all in the name of so-called advocacy, awareness and research fundraising. Unfortunately I didn't have the numbers to protest the event and make a major impact with a boycott. I decided to register for the Town Hall – not as a way of being complicit – but as a way to gently and smoothly show the problems with Autism Speaks, their actions, their discrimination, and what people with Autism can do and what they really want.

Attending the event alone would not be enough, so I supplied myself with two fliers. One was an article listing ten misconceptions of autism by Alex Plank, a fellow person with autism and founder of the online community The other was a fact flier produced by ASAN (Autistic Self Advocacy Network), titled, “Why Autism Speaks Does Not Speak For Us,” which had a concise and current reference list along with its facts.

November 13th, Friday: the day of the Town Hall had finally arrived. I walked in the conference center at the satellite location to find a registration table with an Autism Speaks banner taped to the front. I picked up my name tag – they had listed me in the wrong state; I kept walking. The next person I encountered I'd met before, on a board for a resource center for persons with autism that had its space at a university. Unfortunately, this board has dissolved and the resource center closed for good. What's worse is that she is now working for Autism Speaks, and as I walked up to her, she treated me as though I were 4 years old.

“Oh Hi [Mr. E], How are YOU? (Fine) Do you REMEMBER me? (Yes) Let me take you to your table-”

At this point, I calmly went about my way and went to my table, as I became tired of the 'special' treatment.

I found my place at the table and put down my bag, proceeding to pass out my fliers. No one questioned me, nor did they question if I was a part of the staff leading the event – they happily took the fliers as if it was a part of the Town Hall. Every flier I printed up was given out; none were left over.

Once I sat back down, I looked around and watched as the participants (who were waiting for the Town Hall to start) actually read the fliers I handed to them. This may sound insignificant, but to me it made a huge impact – our message was being read! Before the conference started, I was approached by a few people who stated that they appreciated receiving the fliers, and thanked me for having the courage to bring them to the Town Hall. Only one person spoke in disapproval.

10:20 am: the National Town Hall started. A giant video screen beamed in a live feed from the University of Chicago where the actual Town Hall was centrally held. I was at one of the satellite locations, of which there were 16 total. A few speakers appeared on the screen, including two from Autism Speaks: Lisa Goring, Director of Family Services, and Peter H. Bell, Executive Vice President. Director Goring's speech focused on the topic at hand, which was advancing futures for adults with autism. Executive Vice President Bell, however, decided to tell a personal story about his family's experience with autism and how he and his wife had prepared for having a baby. I found this unnecessary and off track, and so did others, as shown in the faces and reactions of the crowds both at the Town Hall and at the satellite sites.

The program was not run by Autism Speaks (although funded and organized by it) but by AmericaSpeaks, a nonpartisan organization based in Washington, D.C. that uses technology for discussion of public issues. Daniel Clark, an Associate of AmericaSpeaks, came on stage and laid out (vaguely) how the Town Hall would work, and introduced the “Theme Team,” a group of people with laptops set up to consolidate the various data received from around the various sites and “create common themes.”

There were four different points to be voted on, but each table in each site was encouraged to discuss the issue – and at our table, we all agreed that each point's list of strategies needed some modifying. This, of course, would not happen, and was not the point of the Town Hall meeting. The longer it went on, I started to think that this was merely a showcase for Autism Speaks' national agenda for adults with autism, and all who attended were a test group who would 'streamline' the agenda strategies down for them.

I was only half right.

Before each point's list of strategies was a sentence that stated its five-year vision. The central site in Chicago, seemingly desperate to show a person with autism 'participating,' allowed an autistic to read that sentence. Overall, the event had extremely little participation by anyone on the autism spectrum. They did have a 'special' segment for a person with autism who could draw quickly and with proficiency: they asked him to draw an illustration that interpreted what the Town Hall had accomplished that day. Did we get to see any of his work? You can guess the answer: No. This token participation had the feel of a minstrel show put on by persons in the present day: tasteless, ignorant, horribly discriminatory, and wrong in every way.

The Town Hall didn't actually fit a Town Hall-type of meeting; it was more of a discuss-and-vote type of meeting. This event wasn't really devoted to developing or modifying current ideas, but rather reinforcing the current proposals and strategies that were shown to us that day. Change or direct input incorporating original and/or unique ideas was not accepted due to the fact that all content was filtered & watered down by the “Theme Team” into something deemed more “acceptable.”

Now that the Town Hall is over, what did the participants (majority 45-64 year-old white relatives of or program/service providers to a person with autism, with an income of at least $60,000/year and up) actually decide, and what will they do next?

The AFAA (Advancing Futures for Adults with Autism) wants participants to become a “fan” of them on facebook, share resources and stories on their website, spread information about AFAA through word of mouth, and participate in the discussion forums on the site ( In 2010, AFAA will host an Autism Congress, which I'm sure will represent people who speak for people with autism.

As I left the conference room, nevertheless feeling empowered that people actually read the fliers I passed out, Executive Vice President Peter Bell from Autism Speaks appeared on the screen one last time, demanding 90 seconds from the audience as they began to pick up and leave. I slowly turned around to hear an admonishment cloaked in praise:

“...and for those of you who have autism who attended today, thank you.”

I stood there, shocked at the sheer hypocrisy of the statement compared with the entirety of the Town Hall. Like many autistics, I would have traded all the thank yous in the universe for equal representation and the ability to serve in positions of leadership for groups that claim to speak on our behalf.

Giving out those fliers was my first step towards getting our own voice heard.


Stephanie Lynn Keil said...

"Overall, the event had extremely little participation by anyone on the autism spectrum."

I notice that many events purportedly for those on the autism spectrum often have little participation by anyone with an ASD. Can anyone tell me why this is?

Anonymous said...

I was to conference in Philadelphia and it felt very condescending towards me. I tried to dress myself up as if I was going for a job interview but I felt like I was still under dressed by the overwhelming 50-60 year olds. Trying to get my voice hear is like going through a huge culture clash.

At least I was able to get my voice across by the people at my table and was impressed that I overcame a lot to get to the point where I am at.

I was fortunate enough to get a table through a friend's sponsor and some of the representatives thought I was a facilitator. Or maybe they thought they would say that to make me feel better, I am not sure.

Over all, great networking event but it felt like it was a rubber stamping event and not a true advocacy group. The last thing I want is to have money sent to people who did not live through what I lived through. In the next few weeks, I want to write a more in depth analysis of the group meeting and I hope more people would know about the truth before January. I wonder why they are delaying any press about it until January.

Name left to Anonymous since I do not want to offend anybody who went to the conference with good intentions, namely the parents of autistics who went there.