I am writing as the father of a severely autistic boy nearing 12 years of age in New Brunswick, Canada. I started an autism blog site called Facing Autism in New Brunswick 16 months ago as a means of lobbying local and national government, educators and autism service providers. I also started it, in part, because of the lack of internet sites focusing on the real needs of autistic children and adults and their families. Much of the internet "autism" fare really reflects a subgroup of SOME high functioning autistic persons and a handful of parents who all have one element in common: they all glorify autism as something other than what it is, a serious neurological disorder which impairs the lives of autistic children and adults.
For this group, as alluded to in the New York Times article, "harsh-upsetting" language describing autism is more upsetting than the harsh-upsetting realities of autism. It is this highly organized internet community which reacted with hysterical outrage to the "Ransom Notes" campaign just as they did to the Autism Every Day video and all other efforts to portray the negative realities that restrict the lives of many people with autism. They do not, however, speak for parents like myself, with an autistic son who does not understand language on such a level that he would be offended by the imagery of the Ransom Notes campaign, imagery which I personally find provocative but not unduly harsh or upsetting.
I do not find honest accurate description of autism realities to be harsh or upsetting. Not when compared to the real challenges faced by autistic children who injure themselves, walk into dangerous daily life situations unaware of the risks, appear in news stories as having wandered away, often, but not always , to be found safe, or who live their lives as adults in the care of strangers. As such a parent I thank you for the Ransom Notes campaign which was a courageous effort to break through the persistently trivializing autism awareness campaign of those who organized the petition and drive to silence the voices of those who inspired the Ransom Notes campaign.
I recently received a message on this blog site from an "anonymous" poster. The message appears to have been sent to me by mistake as part of a spam style mail out of anyone who posted on the Ransom Notes topic at one of the internet sites organized to quash the campaign. I posted there in opposition to that effort. The message I received is part of a continuing effort to harass you and NYU for your effort to raise public awareness of the seriousness of autism disorders. It states:
"NEXT STEPS -
they are not hearing us
They have not responded to our requests to pull the campaign and it sounds like we are really emboldening Harold Koplewicz and his boss, Robert Grossman, appears to be letting Koplewicz see the campaign through. I found some contacts that are over both of their heads and weneed to promote a major emailing, writing and phone calling campaign to Medical Center Board Chairman Kenneth Langone, NYU President John Sexton, and NYU Trustee Chairman Martin Lipton. Here is their contact info; PLEASE help get the word out."
I do not subscribe to the views of the organizers of the "shut down Ransom Notes" campaign and I am not alone. As the host of a site where I try to discuss the WHOLE autism picture, positive and negative, I occasionally receive emails from parents appreciative of the honest portrayal of autism that I try to present here. As a father I appreciated the courage of the parents featured in the Autism Evey Day video who addressed the harsh-upsetting realities confronting their autistic children. And I appreciate your courage in addressing these realities. Many parents are busy trying to help their autistic children, go to work, and care for other family members and not everyone is willing to risk the public condemnation that you have endured at the keyboard busy hands that have opposed the Ransom Notes campaign.
I sincerely thank you for your efforts to portray the realities of autism and to create true autism awareness.