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HeARTs for Autism®
Supporting Families and Raising Awareness for the Autism Spectrum Disorders

November 2007 – Ransom Notes

Hello Spectrum Families and Friends!

There is an interesting controversy right now about the advertising campaign from the NYU Child Study Center. The intention of the public service announcements is to raise awareness about childhood psychiatric conditions. They are unique in that they are "ransom notes." For instance, one states "We have your son..." It is for Aspergers Syndrome. "We have your daughter and are forcing her to throw up..." is for Bulimia. As a marketing consultant, I like the impact potential - the point of PR is to get attention. As a mom with a child trying to make sense of his condition, being held captive is not the perspective we choose. At times, it seems true as I watch him struggle with certain communications and most relationships, but the victim mentality ultimately is not a healthy attitude. We choose to speak of it as a condition and continually practice strategies for him to learn to navigate the murky seas of ASD.

Over 20 disability groups are now fighting to remove the ads, particularly groups associated with Autism. My sense is they are shocking - that's the point! If you are in the general population, you may not be aware of the statistics, let alone the impact of these conditions. If you are a person or family member impacted, the rawness of the message grates at you in a sickening way. That is the unfortunate byproduct of this "campaign." NYU states they wanted awareness and dialogue - well that is happening. The question is do they understand how to responsibly manage the fallout. This further highlights the need for family supports and a society which seeks open, loving ways to embrace the differently- abled. Much marketing in the Autism arena today is fear based and desperate because that's what makes money - as one large group told me, the dollars are in the pity stories. I would prefer not the pity, but the compassion and genuine interest of professionals to do authentic research into multiple treatment approaches and for agencies and schools to provide authentic, affordable services for the affected persons and families.

You can visit http://www.aboutourkids.org/about_us/public_awareness to learn more about the advertisements and see their explanations. Below is a response written by Ari Ne'eman of ASAN an adult Autistic who disagrees with the approach. Depending on where you stand in this dialogue, it is a heated topic right now, but we can all agree there is an urgent need to address the neurological and mental health conditions abounding in this country. At the same time, mental and behavioral health matters are gravely underfunded and underserved - and misconceptions and fears alienate the person and families. Hopefully, the dialogue and effect radiating from this campaign will be timely and constructive diagnosis and treatments. As a community, let's move the health profession, the educators, the politicians, etc towards real services in real time, NOW!

Robin V Schwoyer
HeARTs for Autism, Director

From Ari Ne'eman
Hello all,

As some of you may already be aware, I appeared on the CW 11 Evening News last night during a segment about our response to the "Ransom Notes" campaign. While I didn't see the segment personally - I was traveling back from Manhattan at the time after filming – I am told that it gave positive coverage to our side. The Autistic Self Advocacy Network remains hard at work keeping the pressure on for a recall of these offensive and damaging ads. As you can see, our response campaign is continuing to pick up momentum, with coverage on television, in the New York Times, the New York Daily News and the Wall Street Journal Health Blog. We have heard from sources close to the NYU Child Study Center that your calls, e-mails and letters are having an impact. However, they continue to believe that the furor will die down if they just "ride out the storm", as Dr. Harold Koplewicz, head of the NYU Child Study Center, stated in the New York Times. It is time that we show them that we're not going to let them get away that easily.

There are now twenty disability rights organizations involved in the joint campaign to ensure the withdrawal of these letters and more are on the way. Hundreds of signatures are being collected endorsing the disability community's joint statement – please join them by signing this http://www.petitiononline.com/ransom/petition.html petition. Yet, the most important thing you can do is to write, e-mail and call the Child Study Center and the other supporters of the "Ransom Notes" campaign. Details about how to do that are here http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=21. Please don't hesitate to pass this e-mail and the other information on how to respond to the "Ransom Notes" campaign to the listservs, blogs and others. Only by contacting those responsible and calling on them to withdraw this campaign immediately can we communicate that our cause is not a passing storm, that NYU can weather and disregard, but a undeniable campaign of outrage from a united disability community. We will not go away. We will not surrender. We will not be ignored.

I'd also like to take a moment to point out to you a positive example of an awareness campaign that we hope will someday soon be emulated throughout those sections of the medical community dealing with disability. The Cure Pity Campaign http://www.curepity.org, by the Gillette Children's Specialty Healthcare, shows children with disabilities as human beings,
deserving of the same respect and possessing the same hopes and dreams as everyone else. At the same time, I do not think anyone can deny its effectiveness in communicating its important message. Perhaps someday we will see NYU and other research centers taking similar approaches. Until then, thank you to all of you who have written, called and e-mailed and to
those of you who have yet to do so or will do so once again.

Ari Ne'eman
The Autistic Self Advocacy Network, President

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