Update: ASA Reponds to criticism today HERE. While feedback has been very positive, some individuals on Facebook have expressed concerns about the word “born.” Please note the intention of the billboard, which was completely funded by an individual donor, was to get a message out to the general public about the rising incidence of autism. The billboard was not meant as a venue to state the Autism Society’s organizational position about the finer points of the cause or course of autism. We provide more detailed information on our website. So an "individual donor" can state a message that is not in keeping with the organization overall? Interesting.
Managing Editor's Note: There has been a thread on FB of parents posting photographs of their children who were not born with autism. They run (with parental permission) at the end of this post. Perhaps ASA needs visuals to understand?
By John Gilmore
So what is with the Autism Society of America anyway? They are trumpeting on their Facebook page that they have put up a big billboard that says, “1 in 88 children are born with autism.” What? Haven’t these people even heard of regression? Is it still the 1980s? What is going on over there?
When my son was diagnosed with autism in 2002 there were 10 Autism Society chapters in New York. Since then three simply folded their tents and disappeared including the one in Queens, New York’s largest county. The Manhattan chapter consists of one, I am not exaggerating, one elderly woman who started the “chapter” back in the 70s. The Brooklyn chapter is half a dozen of the original founders. And several other chapters are very low visibility as well. Some are quite active and vigorous, but how do you have chapters of an organization dedicated to a specific disorder fold in the middle of an epidemic, and in the middle of America’s largest city. What gives?
This might be part of the problem. A couple years back the Autism Society changed their governance practices so that instead of the members electing the national board, the board itself appoints new directors becoming self-perpetuating, and answerable only to itself. If you look at the board now compared to a few years ago there is a stark difference: parents have disappeared. In 2006 at least nine of the fourteen board members were either parents or on the spectrum. Today, according to the biographies provided on the ASA website, 2 are parents and one member is on the spectrum, out of 15 directors. Many of the other board members are affiliated with businesses that sell things to the autism community, or are affiliated with service providers. One of the board members did not mention in her ASA website bio that she is the mother of a deceased child with autism, and I learned this only from following a link to a newspaper article from the website of a foundation she created. What is she hiding?
Given the experience the majority of parents I know have had with schools, service providers and administrators the last thing we need is a major autism organization dominated by people who do things to and “for” us and our children without the life experience we have. It’s like a veteran’s organization that excludes vets.
And it leads to the Autism Society spending large sums of money on a billboard that is patently false, and denies the lived experiences of hundreds of thousands of parents who witnessed their child losing speech, losing connection and retreating into autism.
It is a lie. It is insulting, and it should be taken down as soon as possible. If you agree please give the headquarters of the Autism Society of America a call at 1 (800) 328-8476 and politely ask them to correct their billboard or take it down.
John Gilmore is Executive Director of the Autism Action Network