New York University Child Study Center
Dear Dr. Koplewicz
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 -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:
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 we need 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.
Harold Doherty
Fredericton, NB, Canada
autism
Nice commentary, Harold!
ReplyDeleteThank you John.
ReplyDeleteI know you are aware of the internet bloggers who daily suppress the truth about the truth of autism. And who vilify anyone who does speak the truth. The whole truth.
My son Jack is one of the most loved human beings on the planet. I am no doubt a better person because of our experience with autism. I look at the word in a different way now. Our family is much closer because of it. I've met phenomenal educators, advocates and parents that I would possibly have never connected with because of autism. I've learned who my true friends are. And most of all, I am strangely more connected to him because of the challenges we face. There is an absolute up side.
ReplyDeleteEven though our family is one of love and hope, the autism that severely affects my son's ability to communicate is not warm and fuzzy by any means.
I hate what autism has done to my little boy and appreciate efforts to make the public aware of the ugly side of it. It HAS robbed him of the ability to communicate. There IS a possibility that he may never be able to care for himself. So in our case, the ad is accurate and therefore rings true.
I think there are many different, wonderful mindsets in our autism "community" as well as wide variety of experiences. No doubt my personal views will evolve over time. I'm only a couple of years into this and am learning so much from those who have walked this path before me.
Perhaps if ours was not such a severe case, I would react differently? Maybe feel more offended? Maybe if Jack were able to say more than two words, or if he could type or if he could sing or had some way of letting me know what is going on in his beautiful mind.
But he can't.
At all.
And it's because of one damn thing.
Autism.
That certainly doesn't mean we've just thrown our hands up in despair. We have many, many sunshine moments. We laugh a lot. We hug and run and play. We hope. We are working hard to help Jack reach his full potential, just like we aim for with our NT daughter. That, along with just being a loving, happy family, was our goal as parents long before autism arrived on the scene.
We focus on the positive, even though the negativity of autism looms. We'll love and care for our precious little boy for as long as there is breath in our bodies. That's our personal ad campaign to the world every day. That in combination with the many, many different approaches to awareness in our world, I hope will make things better.
I didn't take part in the campaign to stop the "ransom notes" because I am a diehard supporter of free speech. But I strongly disapprove it.
ReplyDeleteHow are you so sure that Conor cannot be offended by the notes? There are many severely autistic people (e.g. Sue Rubin) who were thought to be also severely retarded and not aware of what was going on around them, and then turned out to be intelligent and aware. When communication is so impaired, how can you be sure how much is understood?
But even if Conor cannot understand, there are other autistic children who can, there are the kids with Asperger's, ADHD, depression, OCD. They all can understand.
Would you reveal to somebody you love that his disease is terminal, just because this is the truth? How much harm would you accept in the name of truth?
I've written here before that a relation of mine has schizophrenia. She said at least once, "I'm no use to anyone. I'd better kill myself." Happily, she didn't proceed.
If tomorrow a New York teen with ASD or mental ilness hangs himself and leaves behind a note that he doesn't want to live because he will never be anything more than a burden to others, who will be to blame?
At the end, I want to quote an open letter to the Child Study Center. It is by a mother now struggling with the tough decision to place her young adult autistic son in residential care, I guess you know whom I mean.
"...You also purport to be able to change the autism with your interventions, and that all it takes is a phone call to your clinic. That is an outrageous claim on so many levels..."
I agree. Last time I checked, autism was still incurable.
It will be interesting to see how many "sunshine moments" this Judith has once she has lived with autism for another few years and then a lifetime. She'll be taking her rose colored glasses off then.
ReplyDelete