Action For Autism

More on NYU and Ransom Notes

The NYU ad campaign on autism and other disorders has quite rightly angered a lot of bloggers. I am struck by the reasoned responses of the writers, many of whom are autistic themselves. The campaign is supposed,

“to create awareness and spark dialogue about childhood psychiatric disorders”

It certainly provoked a discussion. The many people who have written to NYU to raise questions about this campaign have all been referred to  Harold S. Koplewicz, M.D., Director, NYU Child Study Center. Dr Koplewicz is responding to all letters with a form reply that repeats, word for word the content of the Ransom Notes Campaign web page. When autistic children repeat a script over again and ignore what the other person is saying we call it echolalia. When directors of child study centers do it, apparently they are encouraging dialogue. Well, here are some contributions to the dialogue. Some of them are autistic but none are as echolalic as Dr Koplewicz.

Autism Vox 

How we talk about autism—how we talk about autistic persons—directly impacts on how the public, how people, think about autism, and how they perceive and act towards autistic persons. Implying that an autistic child is like a child who has been kidnapped—-is a child who has been kidnapped—recalls older stereotypes of autistic children as “caught” and “imprisoned” in an “autistic shell,” and their real (normal) self “trapped” inside. It is not too hard to find references to autistic children that use such language, as in this commencement speech presented by Autism Speaks co-founder Suzanne Wright on May 15, 2007: 

There is a beautiful little boy in my family who has been kidnapped by autism.

Abnormaldiversity

 I am diagnosed with PDD NOS, which is a condition related to Asperger Syndrome and Autism (in my case I’m more AS-like), and with PTSD, which in my case results in depression and mild OCD-like behavior.
I would like to say clearly that there is an important difference between the two types of conditions I am diagnosed with. PTSD is something I have, which causes me serious psychological pain and does feel a bit like ‘being kidnapped’. In contrast, PDD NOS is something I am, which affects my thinking in such profound ways that I cannot imagine it any different, has many positive effects as well as negative ones, and only harms me in making me fit poorly within my environment - change the environment and I’m fine.

Blog from the Windowsill

A campaign to raise parental awareness about childhood psychiatric disorders is using ransom notes.Because parents of children diagnosed with these issues aren’t scared enough already, or doing their best already. My child is not a disorder and he is not a prisoner.

How about raising awareness by helping people with undiagnosed children recognize the signs? Not to mention the doctors who fail to notice or to believe parents reporting the early warning signs? (Yes, pediatrician who told me autism was fashionable, I do mean you.)

Whose Planet is it Anyway

Many of us do indeed feel as if we’re being held for ransom, but you’ve got the identity of the perpetrators all wrong. To find a clue, you might want to take a good look in a mirror. We—that is, America’s autistic citizens and our families—have had our lives hijacked in recent years by a greedy profiteering agenda that has deliberately and viciously stigmatized autistic people as broken, less than human, our souls stolen from us, and similar bigoted garbage, all for the purpose of making money by selling therapies. As a result, we now face prejudice and discrimination every day, in all aspects of our lives.

My thoughts on

Throughout my life, I have grown up with the stigma of being autistic and have found that most of my problems with autism are not so much with the disorder itself, but the negative press that seems to be coming in all directions from the media and those who claim to be working for our benefit. I work a full time job as an IT consultant at an oil company and already have a hard enough time living with being compared to Rain Man, tragedies, cancer and people asking questions about whether I am likely to snap and kill everyone, without this angle of terrorism being hoisted upon my shoulders and the shoulders of all other who are like me.

stop. think. autism.

How about a poster about how people who fidget or don’t make eye contact or may have difficulty in social settings be accepted? How about identifying these people as valuable members of society? How about respect? What about teaching kids it’s not right to bully someone, simply because they are different. This center had an opportunity, obviously they had the funds, to make a campaign that would de-stigmatize Autism and the psychiatric disorders they are talking about. But, they neither achieved the ability to create public awareness nor truly help the people they are supposedly advocating for.

Crimson Thoughts

At a minimum, it is insensitive to say such things, anyway. How pleased am I to learn that I have a ransom note written in my name? I can’t say I’m thrilled, especially since, if I’m captivity, I totally missed the point. I could say I have been locked away from social interaction in degree, but no more than a regular person is locked into certain types of thoughts. And if you’re locked away from something, it seems that you can be given something as well; my social distance has given me a perspective that, frankly, I like.

Mother of Shrek

And what does the future hold?
Some see autism as a weed that has to be plucked from the worlds garden.  Autism is not like cancer, it is not an illness that needs to be cured. Autism is an integral part of our society. We shouldnt have to be subjected to things like this.

So there you have it. I urge you to follow the links and read these blog posts in their entirety. And if you are minded to write to NYU here is the reply you can expect to receive.

The NYU Child Study Center’s “Ransom Notes” public service campaign is designed as a provocative wake up to create awareness and spark dialogue about childhood psychiatric disorders, one of America’s last remaining silent public health epidemics. Twelve million American children and adolescents face daily battles with psychiatric disorders. Untreated, these children are at risk for academic failure, school dropout, substance abuse, suicide, unemployment, and imprisonment. Children who do receive appropriate treatment, however, can learn to function and thrive.“Ransom Notes” may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We acknowledge the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.

The NAS made a similar mistake a few years ago. They accepted a pro bono offer from an advertising agency. Fotunately the resulting campaign was baffling rather than insulting and exploitative. Now they consult with autistic people before launching campaigns about them. Perhaps NYU should follow their example.

EDIT

Thanks to Do’C over at Autism Street for alerting me to Ari Ne’eman’s note and call to action on the  Autism Self Advocacy Network web site. ASAN have taken on the task of co-ordinating responses to the NYU ad campaign. Please visit their web site to learn how you can help.

December 9th, 2007 Posted by Mike | Autism, National Autistic Society, Neurodiversity, autism acceptance | 9 comments