A woman by the name of Christine posted a comment which I have not published as a comment, but decided to answer publicly here:
WOW people don't know Dr. Jerry at all. Words can't explain what he does for children with autism. You are taking his words and twisting them.
Actually , I printed the words exactly as they were written. Perhaps you should read Jenny McCarthy's book and look at what "Dr. Jerry" has written. You will see that I have printed the comment word for word. It's not just me either. Check out these blogs and videos for other responses from autistic people and parents:
http://leftbrainrightbrain.co.uk/?p=682
http://www.youtube.com/watch?v=O4zsb0tlHF0
http://wskrz.wordpress.com/2007/10/04/dear-dr-kartzinel/
http://autismdiva.blogspot.com/2007/10/jerry-kartzinel-and-lying-about-nature.html
http://bigwhitehat.com/?p=353
http://survivingmotherhood-mom26children.blogspot.com/2007/10/message-to-dr-jerry-kartzinel.html
http://tanglebones.com/articles/2007/10/07/so-very-wrong/
http://leftbrainrightbrain.co.uk/?p=663
http://www.spoems.com/video_O4zsb0tlHF0.html
http://www.kevinleitch.co.uk/wp/?p=446
Any one with a child with austism remembers the day they recieved those words and you can't tell me you jumped up and down with joy. No you went home and felt like someone ripped your guts out. [I've left the spelling errors intact]
*If* I had a child, I probably would not be too surprised or upset that he or she received a diagnosis. Why? Because I'm autistic and know that the chances of me having an autistic child are pretty high. The reason you feel like your guts have been ripped out is because of what you've heard about autism in society, in doctors offices, from autism societies and in parent groups. People make a lot of money and get a lot of sympathy for making autism out to be this horrible thing.
Perhaps you should spend more time talking to autistic people about just how "horrible" it is and just what they think of the negative PR...I think you'll find I'm not alone in my opinion.
That is what Dr. Jerry is talking about. I traveled from New York to Flordia so he could treat my son. And I would not change a thing. Dr. Jerry helped recover my son yes RECOVERED. I have never meet a Dr. with so much love for our children. It really makes me sad to see what people are saying.
I "recovered" too. Read the rest of my blog to find out what happened to me in my 20's. I got very ill and almost died because my core issues were overlooked and ignored.
I'm glad Dr. Jerry was able to help you and your son. How much did it cost you? Did you have to re-mortgage your house?
I pray he doesn't go through what I went through later on in life. I really do...
Best of luck to you and your son. And do read Jenny's book to see where I got the quotes from. Also check out the link where the interview was taken. You'll see word for word just how much "love" Dr. Jerry and his wife have for autistic children...including their own.
All the best to you and your son.
Wednesday, December 19, 2007
The Ransom Notes have been Scrapped - Yes!!
Well, looks like all of us who wrote letters and signed petitions made a difference...NYU has pulled the Ransom Notes Campaign! Thanks to everyone who stood up against the further stigmatization of folks with disabilities.
One small step toward a brighter future for us...one small step towards eliminating the negative stigma out there in ad campaigns... one small step toward dignity.
Thank you all. Thank you as well to NYU for seeing the reaction and responding appropriately.
This just in:
A Message Regarding the "Ransom Notes" Public Awareness Campaign
http://www.aboutourkids.org/about_us/public_awareness
When we launched our "Ransom Notes" public awareness campaign two weeks ago, our goal was to call attention to the millions of children with untreated psychiatric and learning disorders. We wanted a campaign that would grab people’s attention, break through the clutter, and serve as a wake up call to what we believe is America’s last silent public health crisis. We felt something dramatic was needed to call attention to the dire outlook for children with untreated disorders: higher risk for academic failure, school dropout, substance abuse, suicide, unemployment, and imprisonment.
The campaign succeeded in getting people’s attention and sparking dialogue, but much of the debate centered on the ads instead of the issues. We’ve received thousands of calls and letters from parents, mental health professionals, educators, advocates, and concerned third parties, all of whom are passionate about helping children. While many people praised the campaign and urged us to stay the course, others were troubled by it.
Though we meant well, we've come to realize that we unintentionally hurt and offended some people. We’ve read all the emails, both pro and con, listened to phone calls, and have spoken with many parents who are working day and night to get their children the help they need. We have decided to conclude this phase of our campaign today because the debate over the ads is taking away from the pressing day-to-day work we need to do to help children and their families. They are and remain our first concern.
Our goal was to start a national dialogue. Now that we have the public’s attention, we need your help. We would like to move forward and harness the energy that this campaign has generated to work together so that we do not lose one more day in the lives of these children. We hope you will partner with us to bring the issues surrounding child and adolescent mental health to the top of America's agenda. Work with us as we fight to give children and their families equal access to health insurance, remove the stigma that the term "psychiatric disorder" so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority.
We invite all of you to continue this conversation online at a “town hall” meeting that we will hold early next year as we plan the next phase of our national public awareness campaign on child mental health. Look for details on our web site www.AboutOurKids.org.
Sincerely,
Harold S. Koplewicz, M.D.Founder and Director,
New York University Child Study Center
One small step toward a brighter future for us...one small step towards eliminating the negative stigma out there in ad campaigns... one small step toward dignity.
Thank you all. Thank you as well to NYU for seeing the reaction and responding appropriately.
This just in:
A Message Regarding the "Ransom Notes" Public Awareness Campaign
http://www.aboutourkids.org/about_us/public_awareness
When we launched our "Ransom Notes" public awareness campaign two weeks ago, our goal was to call attention to the millions of children with untreated psychiatric and learning disorders. We wanted a campaign that would grab people’s attention, break through the clutter, and serve as a wake up call to what we believe is America’s last silent public health crisis. We felt something dramatic was needed to call attention to the dire outlook for children with untreated disorders: higher risk for academic failure, school dropout, substance abuse, suicide, unemployment, and imprisonment.
The campaign succeeded in getting people’s attention and sparking dialogue, but much of the debate centered on the ads instead of the issues. We’ve received thousands of calls and letters from parents, mental health professionals, educators, advocates, and concerned third parties, all of whom are passionate about helping children. While many people praised the campaign and urged us to stay the course, others were troubled by it.
Though we meant well, we've come to realize that we unintentionally hurt and offended some people. We’ve read all the emails, both pro and con, listened to phone calls, and have spoken with many parents who are working day and night to get their children the help they need. We have decided to conclude this phase of our campaign today because the debate over the ads is taking away from the pressing day-to-day work we need to do to help children and their families. They are and remain our first concern.
Our goal was to start a national dialogue. Now that we have the public’s attention, we need your help. We would like to move forward and harness the energy that this campaign has generated to work together so that we do not lose one more day in the lives of these children. We hope you will partner with us to bring the issues surrounding child and adolescent mental health to the top of America's agenda. Work with us as we fight to give children and their families equal access to health insurance, remove the stigma that the term "psychiatric disorder" so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority.
We invite all of you to continue this conversation online at a “town hall” meeting that we will hold early next year as we plan the next phase of our national public awareness campaign on child mental health. Look for details on our web site www.AboutOurKids.org.
Sincerely,
Harold S. Koplewicz, M.D.Founder and Director,
New York University Child Study Center
Monday, December 17, 2007
A Love Letter for an ad campaign perhaps
So, I was considering those darned ransom notes and I thought "What about love letters? Wouldn't they be a better way to raise awareness and instill some positive exposure?"
Well, being the type of person I am, I went ahead and wrote a couple. (If I'm going to complain, I might as well offer an alternative, right?)
Here are my "Love Letters"
"Dear Mom and Dad,
My condition may be puzzling to you and you may be wondering why I behave and react to things the way I do.
You may notice as I grow that I need extra help in understanding myself and in dealing with the world around me that I experience so much differently than you do. Sometimes the world can be painful or frightening to me and I don't know what to do.
I know it will be hard for you and me but I appreciate your patience as I learn to accept myself and grow as a person. I may not always repond the way you want me to since it is difficult for me to express myself when I'm under stress.
Please understand that normal for me is different than normal is for you and other people.
Please know that I love you, despite not always being able to tell you so all the time, and not being always able to control my behaviours, reactions, experiences, etc.
I trust you to help me be the best person I can be and I love you dearly for it.
With Love from:
Your Autistic Child
xxx ooo"
And for ADD/ADHD
"Dear Mom and Dad,
You're probably wondering why I am so full of energy and having a hard time concentrating on one thing or another. My reason for this is because I have a lot going on in my mind and my body which I have a hard time slowing down...it all gets very overwhelming and I don't know whether I am coming or going some days!
I have a lot of passion and great ideas that I want to share with everyone but have a very hard time keeping track of them all. I realize that this may be very frustrating to you and my teachers at school, but I do try very hard to learn and do the things I am supposed to do. It's very difficult and frustrating for me too.
What I really need is understanding and some help with focusing and quieting my mind which is always racing. I trust that you can help me to accept who I am and become the best person I can be.
I love you and thank you for all of your patience over the years. I really appreciate it!
With love from:
Your Amazingly Passionate Child with ADHD
xxx ooo"
Now, these may sound silly since I just came up with them, but I think they're more positive than what is out there.
Why can we not raise awareness of things with a positive spin?
This might be a neat exercise for folks to try if they want to...write a love letter about your condition, or even a love letter to your child, friend, client, etc. who has a difference?
You'd be amazed at the difference kind words can make in the life of a person who sees and heard very little that is nice about him or her!
One will always catch more flies with sugar than with vinegar! (A silly saying, I know...I mean, who wants to catch flies?? But still, it makes sense in this context. More people respond to nice things than they do to nasty ones.)
Just my thoughts for today...
Well, being the type of person I am, I went ahead and wrote a couple. (If I'm going to complain, I might as well offer an alternative, right?)
Here are my "Love Letters"
"Dear Mom and Dad,
My condition may be puzzling to you and you may be wondering why I behave and react to things the way I do.
You may notice as I grow that I need extra help in understanding myself and in dealing with the world around me that I experience so much differently than you do. Sometimes the world can be painful or frightening to me and I don't know what to do.
I know it will be hard for you and me but I appreciate your patience as I learn to accept myself and grow as a person. I may not always repond the way you want me to since it is difficult for me to express myself when I'm under stress.
Please understand that normal for me is different than normal is for you and other people.
Please know that I love you, despite not always being able to tell you so all the time, and not being always able to control my behaviours, reactions, experiences, etc.
I trust you to help me be the best person I can be and I love you dearly for it.
With Love from:
Your Autistic Child
xxx ooo"
And for ADD/ADHD
"Dear Mom and Dad,
You're probably wondering why I am so full of energy and having a hard time concentrating on one thing or another. My reason for this is because I have a lot going on in my mind and my body which I have a hard time slowing down...it all gets very overwhelming and I don't know whether I am coming or going some days!
I have a lot of passion and great ideas that I want to share with everyone but have a very hard time keeping track of them all. I realize that this may be very frustrating to you and my teachers at school, but I do try very hard to learn and do the things I am supposed to do. It's very difficult and frustrating for me too.
What I really need is understanding and some help with focusing and quieting my mind which is always racing. I trust that you can help me to accept who I am and become the best person I can be.
I love you and thank you for all of your patience over the years. I really appreciate it!
With love from:
Your Amazingly Passionate Child with ADHD
xxx ooo"
Now, these may sound silly since I just came up with them, but I think they're more positive than what is out there.
Why can we not raise awareness of things with a positive spin?
This might be a neat exercise for folks to try if they want to...write a love letter about your condition, or even a love letter to your child, friend, client, etc. who has a difference?
You'd be amazed at the difference kind words can make in the life of a person who sees and heard very little that is nice about him or her!
One will always catch more flies with sugar than with vinegar! (A silly saying, I know...I mean, who wants to catch flies?? But still, it makes sense in this context. More people respond to nice things than they do to nasty ones.)
Just my thoughts for today...
Tuesday, December 11, 2007
Just for fun - Here's a ransom letter I can live with!
Sorry for my weird mood this morning - trying to finish two courses as fast as possible is sucking away my brains...
Help! My homework is holding me hostage! It sent me a ransom letter too:
"We have your life.
We will ensure that for the next four years you will be worried about achieving high grades, writing exams and getting courses done within 6 months so you don't have to buy extensions.
But afterwards, we'll release you with a feeling of accomplishment and a brighter future.
Signed,
Higher Education"
Saturday, December 8, 2007
NYU's Response to My Letter
Well, NYU is definitelyt prompt with their replies! I got this email of response just last night:
Dean Robert Grossman, Michael Recanati, and Ira Statfeld forwarded your email to me, and I am responding on their behalf.
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.
- Harold S. Koplewicz, M.D.
Harold S. Koplewicz, M.D.
Director, NYU Child Study Center;
Arnold and Debbie Simon Professor and Chair,
Department of Child and Adolescent Psychiatry;
Sr. Vice President and Vice Dean for External Affairs,
NYU Medical Center;
Professor of Pediatrics, NYU School of Medicine;
Director, Division of Child and Adolescent Psychiatry,
Bellevue Hospital Center;
Director, Nathan Kline Institute for Psychiatric Research
www.AboutOurKids.org <http://www.aboutourkids.org/> <http://www.abouto/>
While I am thankful for such a prompt reply, I still have a few questions.
First, with regard to suicide: Is this campaign making these children (and adults - let's not forget that children do grow up) any less likely to want to commit suicide?
These folks may see this as a "wake up call", but many of us just see this as just "another campaign against us" to make us look and feel even worse than we already do. I don't feel any better about being autistic looking at those things...does anyone else?
Perhaps I am just an autistic who doesn't understand NT psychology, but how is this helping to end the stigma that's already out there? To the average person, all they see are these nasty little notes everywhere which only contribute to the stigma, in my opinion.
Yes, the campaign is generating dialogue, most of it being how disgusting and medieval this kind of rhetoric is, but I hardly think this is the dialogue the creators of the campaign were aiming for...
*sigh*
I'm wondering when they will get their "wake up call" about how this affects us and how offensive it is? I thought I made myself pretty clear, but I guess it hasn't registered yet.
I often wonder who in this world really has the theory of mind problems? Autistics or certain university trained "professionals"? As someone who is studying to be a university trained professional one day, I sure hope something doesn't happen to me along the way where I might (Gods forbid) adopt this attitude!
My goal in life and my career is to help end this attitude, but I fear it is going to be a very tough battle....
Dean Robert Grossman, Michael Recanati, and Ira Statfeld forwarded your email to me, and I am responding on their behalf.
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.
- Harold S. Koplewicz, M.D.
Harold S. Koplewicz, M.D.
Director, NYU Child Study Center;
Arnold and Debbie Simon Professor and Chair,
Department of Child and Adolescent Psychiatry;
Sr. Vice President and Vice Dean for External Affairs,
NYU Medical Center;
Professor of Pediatrics, NYU School of Medicine;
Director, Division of Child and Adolescent Psychiatry,
Bellevue Hospital Center;
Director, Nathan Kline Institute for Psychiatric Research
www.AboutOurKids.org <http://www.aboutourkids.org/> <http://www.abouto/>
While I am thankful for such a prompt reply, I still have a few questions.
First, with regard to suicide: Is this campaign making these children (and adults - let's not forget that children do grow up) any less likely to want to commit suicide?
These folks may see this as a "wake up call", but many of us just see this as just "another campaign against us" to make us look and feel even worse than we already do. I don't feel any better about being autistic looking at those things...does anyone else?
Perhaps I am just an autistic who doesn't understand NT psychology, but how is this helping to end the stigma that's already out there? To the average person, all they see are these nasty little notes everywhere which only contribute to the stigma, in my opinion.
Yes, the campaign is generating dialogue, most of it being how disgusting and medieval this kind of rhetoric is, but I hardly think this is the dialogue the creators of the campaign were aiming for...
*sigh*
I'm wondering when they will get their "wake up call" about how this affects us and how offensive it is? I thought I made myself pretty clear, but I guess it hasn't registered yet.
I often wonder who in this world really has the theory of mind problems? Autistics or certain university trained "professionals"? As someone who is studying to be a university trained professional one day, I sure hope something doesn't happen to me along the way where I might (Gods forbid) adopt this attitude!
My goal in life and my career is to help end this attitude, but I fear it is going to be a very tough battle....
Friday, December 7, 2007
Follow Up From Yesterday - My Letter
Dear Mr. Grossman,
I am a 32 year old autistic woman who was sent the link to your site by some friends and I am writing to voice my opinion with regard to NYU's "ransom letter" campaign. While I do believe that it is very important for the public to be aware of these disorders, I find the method both distasteful and damaging to the self esteem of those who happen to experience of these disorders first-hand. Currently, I sit on the board of the Autism National Committee, which is an organization that works for the benefit of autistic people and fights for social justice on our behalf. The board is comprised mostly of individuals on the Autistic Spectrum, all of varying levels of ability. Some are heavily dependent on others to look after them while others like me are fully independent. Despite our varying levels of ability and appearance, we all have the same above average intelligence, same need to be accepted and wanted, and the same desire to make a difference.
As an artist, I can appreciate the creativity of the ad campaign. As an autistic person, I find it demeaning and deeply offensive. There must be a more constructive way to get the message out in the 21st Century where we are supposed be living in an age of information and enlightenment, particularly with regards to attitudes toward disabilities. I hope that this society of medical professionals will look into the harm this campaign has caused and I am confident that the good people of NYU will find a more positive way to get the public's attention.
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.
In the past 18 years, I have worked as a health care nurse, palliative care worker, security officer, administrative assistant, IT project manager, computer hardware technician, Livelink administrator and am pursuing a degree in psychology so I can work towards changing the appalling attitudes towards and treatments of autistic children, teenagers and adults.
As a former home care nurse and palliative care worker, I understand the frustration of looking after the disabled on a short term basis and on a long term basis. It's not easy and can be downright frustrating, thankless and tiring. It can also be the most rewarding experience of one's life as it has been for me. Because of my experience as a Toastmaster, I also used to conduct speeches at schools for the Canadian Mental Health Association. The job I was given was to teach teenagers and children not to stigmatize mental illness so that they would grow up and not ostracise people with mental illnesses but try to help them, understand them and accept them. It's a tough feat when the adults, media and societies of this world stigmatise mental illness and disabilities every day.
One might argue that these views are not meant to defame autistic people, just autism itself. The truth is, autism is who we are. It is pervasive and none of us would be who we are without it. Yes, it has its challenges. No, it is not easy being autistic, no matter what level of ability one is at in life. No, it is not easy being a family member or loved one of an autistic person. I recognize that. However, ad campaigns like this do not make it any easier for us to exist or for our loved ones to accept and understand us. Many autistics do tend to take these things personally because we are autistic every day of the year. We were born autistic and will be autistic until we die. We cannot change that and many of us have had to learn to accept who we are, despite others not being able to accept this.
I have a few questions that I would like to ask your Ethics Committee, since I was unable to reach them directly via email yesterday (The emails kept getting bounced back to me):
How is treating Autism Spectrum Disorders like terrorist organizations or kidnappers helping me or any other autistic person who happens to read it? Many autistics have read this and are disgusted by yet another campaign to "raise awareness" in a negative light. Those are the reactions I've seen from when the link to the ad campaign was posted online.
What about the parents being targeted by this campaign? How are they influenced by a society that just cannot accept us?
I would like to direct your attention this website which has a list of articles about the autistic people who have died at the hands of medical professionals, parents and care workers http://www.neurodiversity.com/murder.html. This site contains a list of autistics who have been killed: http://thiswayoflife.org/murder.html. This is a side of the anti-autism campaigns that no one really wants to see, but it must be seen to show the effect these cmapaigns have on people. The messages delivered by these campaigns are very powerful, and in some cases are powerful enough to kill.
How are autistic children who read this going to grow up? How will they feel about themselves in the future? Why will they want to interact with a world that sees therm this way? Many of them can read, and despite not being able to talk, almost all of them understand spoken language...even if they are not speaking in return. I knew what was being said about me by others. Children today know the same.
How many autistic people have considered, attempted or even succeeded at committing suicide because they grow up with the message that they are so "wrong"? This link points to some statistics in England http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=239&a=2371 while the others provide personal stories. http://autism.about.com/b/2007/01/08/daughter-of-singer-burt-bacharach-commits-suicide-to-escape-aspergers.htm http://ballastexistenz.autistics.org/?p=60 http://www.bellaonline.com/articles/art37003.asp As I said in the previous point, the message given by the media and societies is a very powerful one.
What sort of world are we wanting to make autistic children socialize in? One that sees them as terrorists or one that sees them as valuable people who can have a place in society? Sadly, societies and those wishing to raise awareness tend to turn to the former viewpoint.
The last question I have is this: How does this affect people who really have been victims or secondary victims to kidnapping involving ransom? This may sound over the top, but it is something to consider. How would one of these people react to seeing these little ransom notes all over the billboards, kiosks and bulletin spots?
Through my current association with other individuals on the Autism Spectrum, I have learned that a positive environment is far more conducive to learning and socializing than a hostile one. I have also seen some amazing potential and talent being used to help people on the spectrum live independently, make their own money, socialize and handle the sensory differences that so often come with autism. It is truly amazing what positive encouragement, acceptance, empowerment and positive understanding can do for an autistic person and his or her family!
Part of raising healthy, happy and productive children of any level of ability involves providing a positive and encouraging environment where they can grow and learn. Part of maintaining a healthy and happy family environment is to foster understanding, compassion and love. Why not strive for a world that includes us and makes us want to socialize?
I thank you for your kind consideration of this email and do hope that this world will soon be able to help us in a more positive way.
Sincerely,
DJSR [Real name in the original letter]
http://djdialogue143.blogspot.com/
c.c.: Michael Statfeld Recanati and Ira Statfeld Recanati
I am a 32 year old autistic woman who was sent the link to your site by some friends and I am writing to voice my opinion with regard to NYU's "ransom letter" campaign. While I do believe that it is very important for the public to be aware of these disorders, I find the method both distasteful and damaging to the self esteem of those who happen to experience of these disorders first-hand. Currently, I sit on the board of the Autism National Committee, which is an organization that works for the benefit of autistic people and fights for social justice on our behalf. The board is comprised mostly of individuals on the Autistic Spectrum, all of varying levels of ability. Some are heavily dependent on others to look after them while others like me are fully independent. Despite our varying levels of ability and appearance, we all have the same above average intelligence, same need to be accepted and wanted, and the same desire to make a difference.
As an artist, I can appreciate the creativity of the ad campaign. As an autistic person, I find it demeaning and deeply offensive. There must be a more constructive way to get the message out in the 21st Century where we are supposed be living in an age of information and enlightenment, particularly with regards to attitudes toward disabilities. I hope that this society of medical professionals will look into the harm this campaign has caused and I am confident that the good people of NYU will find a more positive way to get the public's attention.
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.
In the past 18 years, I have worked as a health care nurse, palliative care worker, security officer, administrative assistant, IT project manager, computer hardware technician, Livelink administrator and am pursuing a degree in psychology so I can work towards changing the appalling attitudes towards and treatments of autistic children, teenagers and adults.
As a former home care nurse and palliative care worker, I understand the frustration of looking after the disabled on a short term basis and on a long term basis. It's not easy and can be downright frustrating, thankless and tiring. It can also be the most rewarding experience of one's life as it has been for me. Because of my experience as a Toastmaster, I also used to conduct speeches at schools for the Canadian Mental Health Association. The job I was given was to teach teenagers and children not to stigmatize mental illness so that they would grow up and not ostracise people with mental illnesses but try to help them, understand them and accept them. It's a tough feat when the adults, media and societies of this world stigmatise mental illness and disabilities every day.
One might argue that these views are not meant to defame autistic people, just autism itself. The truth is, autism is who we are. It is pervasive and none of us would be who we are without it. Yes, it has its challenges. No, it is not easy being autistic, no matter what level of ability one is at in life. No, it is not easy being a family member or loved one of an autistic person. I recognize that. However, ad campaigns like this do not make it any easier for us to exist or for our loved ones to accept and understand us. Many autistics do tend to take these things personally because we are autistic every day of the year. We were born autistic and will be autistic until we die. We cannot change that and many of us have had to learn to accept who we are, despite others not being able to accept this.
I have a few questions that I would like to ask your Ethics Committee, since I was unable to reach them directly via email yesterday (The emails kept getting bounced back to me):
How is treating Autism Spectrum Disorders like terrorist organizations or kidnappers helping me or any other autistic person who happens to read it? Many autistics have read this and are disgusted by yet another campaign to "raise awareness" in a negative light. Those are the reactions I've seen from when the link to the ad campaign was posted online.
What about the parents being targeted by this campaign? How are they influenced by a society that just cannot accept us?
I would like to direct your attention this website which has a list of articles about the autistic people who have died at the hands of medical professionals, parents and care workers http://www.neurodiversity.com/murder.html. This site contains a list of autistics who have been killed: http://thiswayoflife.org/murder.html. This is a side of the anti-autism campaigns that no one really wants to see, but it must be seen to show the effect these cmapaigns have on people. The messages delivered by these campaigns are very powerful, and in some cases are powerful enough to kill.
How are autistic children who read this going to grow up? How will they feel about themselves in the future? Why will they want to interact with a world that sees therm this way? Many of them can read, and despite not being able to talk, almost all of them understand spoken language...even if they are not speaking in return. I knew what was being said about me by others. Children today know the same.
How many autistic people have considered, attempted or even succeeded at committing suicide because they grow up with the message that they are so "wrong"? This link points to some statistics in England http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=239&a=2371 while the others provide personal stories. http://autism.about.com/b/2007/01/08/daughter-of-singer-burt-bacharach-commits-suicide-to-escape-aspergers.htm http://ballastexistenz.autistics.org/?p=60 http://www.bellaonline.com/articles/art37003.asp As I said in the previous point, the message given by the media and societies is a very powerful one.
What sort of world are we wanting to make autistic children socialize in? One that sees them as terrorists or one that sees them as valuable people who can have a place in society? Sadly, societies and those wishing to raise awareness tend to turn to the former viewpoint.
The last question I have is this: How does this affect people who really have been victims or secondary victims to kidnapping involving ransom? This may sound over the top, but it is something to consider. How would one of these people react to seeing these little ransom notes all over the billboards, kiosks and bulletin spots?
Through my current association with other individuals on the Autism Spectrum, I have learned that a positive environment is far more conducive to learning and socializing than a hostile one. I have also seen some amazing potential and talent being used to help people on the spectrum live independently, make their own money, socialize and handle the sensory differences that so often come with autism. It is truly amazing what positive encouragement, acceptance, empowerment and positive understanding can do for an autistic person and his or her family!
Part of raising healthy, happy and productive children of any level of ability involves providing a positive and encouraging environment where they can grow and learn. Part of maintaining a healthy and happy family environment is to foster understanding, compassion and love. Why not strive for a world that includes us and makes us want to socialize?
I thank you for your kind consideration of this email and do hope that this world will soon be able to help us in a more positive way.
Sincerely,
DJSR [Real name in the original letter]
http://djdialogue143.blogspot.com/
c.c.: Michael Statfeld Recanati and Ira Statfeld Recanati
Thursday, December 6, 2007
Being compared to Terrorists
Just when I thought I'd seen it all, I see a posting about the NYU Child Study Center's new awareness campaign which uses ads that look like ransom notes to inform the public about certain disorders.
A new campaign is being launched by the NYU Child Studies Center to raise awareness of psychiatric disorders in children, including bulimia, ADHD, depression, OCD and yes...autism and Asperger syndrome. http://www.aboutourkids.org/about_us/public_awareness
How it works:
Public service advertisements are being posted bulletin spaces and kiosks around New York in an effort to get the attention of parents so that they can intervene if their child is being "held histage" by a psychiatric disorder.
"The idea behind the "Ransom Notes" is that, all too often, untreated psychiatric disorders are holding our children hostage. These disorders rob children of the ability to learn, make and keep friends and enjoy life." says the website about the reasoning behind the campaign. The ads look as they sound: like pieces of paper with a quick three sentence or less message either scrawled by hand or via pasted lettering, signed by the disorder in question.
The autism one is a typed one that reads:
"We have your son. We will make sure he will not be able to care for himself or interact socially for as long as he lives.
This is only the beginning.
Autism"
The Asperger Syndrome is a hand-scrawled one that reads:
"We have your son. We are destroying his ability for social interaction and driving him into a life of complete isolation.
It's up to you now.
Asperger Syndrome"
I don't know about anyone else, but I found myself offended by these. When I used to volunteer with the Canadian Mental Health Association, part of our work was to go to schools and deliver presentations about how *not* to stigmatize mental health. It's a lot of hard work when messages like these are being seen by children and adults every day. (Bad enough that this organization is manned mainly by doctors)
Fortunately, these ransom notes are not here in Canada, but they are on the internet for anyone to see.
To me, this "comparison" to terrorists is insulting me because it is yet another awareness campaign that uses stigma at the expense of those of us who have to live with the huge mountain of stigma already looming over us.
Who is this helping?
Parents? I doubt it since parents already have enough stress without negative stigma to feed it or add to it. How does it make them feel? Guilty, depressed, angry...definitely not happy.
The people they are trying to raise awareness about? Nothing lowers self esteem quite like being compared to cancer, bird flu, soul- sucking vampires, kidnappers and terrorists. How does that make them feel? Guilty, angry, insulted, worthless...also not happy. Like being different in this way isn't hard enough! Like we need *another* nasty reminder about how the world sees us.
Here's an angle that might not have been considered by the creators of this campaign:
Victims of real kidnapping and their loved ones...how would this affect them? What would a loved one of a kidnapping victim experience if he or she kept seeing these little ransom notes everywhere. It probably doesn't seem like much, but they could experience flashbacks or revisit some painful memories. Maybe I'm going over the top, but I know I wouldn't be too happy about seeing these things if this had happened to me. It would almost be like a cheap parody or something.
At best, I find this campaign tasteless. At worst, I find it demeaning.
This inspires a "fun" project for myself: To make a list of all of the things said about autism in the media and by others which are like this one.
It could take a few days and would take up a lot of space, but it would be interesting to have all of these things in one place to see, wouldn't it?
Something to do when I have time....
A new campaign is being launched by the NYU Child Studies Center to raise awareness of psychiatric disorders in children, including bulimia, ADHD, depression, OCD and yes...autism and Asperger syndrome. http://www.aboutourkids.org/about_us/public_awareness
How it works:
Public service advertisements are being posted bulletin spaces and kiosks around New York in an effort to get the attention of parents so that they can intervene if their child is being "held histage" by a psychiatric disorder.
"The idea behind the "Ransom Notes" is that, all too often, untreated psychiatric disorders are holding our children hostage. These disorders rob children of the ability to learn, make and keep friends and enjoy life." says the website about the reasoning behind the campaign. The ads look as they sound: like pieces of paper with a quick three sentence or less message either scrawled by hand or via pasted lettering, signed by the disorder in question.
The autism one is a typed one that reads:
"We have your son. We will make sure he will not be able to care for himself or interact socially for as long as he lives.
This is only the beginning.
Autism"
The Asperger Syndrome is a hand-scrawled one that reads:
"We have your son. We are destroying his ability for social interaction and driving him into a life of complete isolation.
It's up to you now.
Asperger Syndrome"
I don't know about anyone else, but I found myself offended by these. When I used to volunteer with the Canadian Mental Health Association, part of our work was to go to schools and deliver presentations about how *not* to stigmatize mental health. It's a lot of hard work when messages like these are being seen by children and adults every day. (Bad enough that this organization is manned mainly by doctors)
Fortunately, these ransom notes are not here in Canada, but they are on the internet for anyone to see.
To me, this "comparison" to terrorists is insulting me because it is yet another awareness campaign that uses stigma at the expense of those of us who have to live with the huge mountain of stigma already looming over us.
Who is this helping?
Parents? I doubt it since parents already have enough stress without negative stigma to feed it or add to it. How does it make them feel? Guilty, depressed, angry...definitely not happy.
The people they are trying to raise awareness about? Nothing lowers self esteem quite like being compared to cancer, bird flu, soul- sucking vampires, kidnappers and terrorists. How does that make them feel? Guilty, angry, insulted, worthless...also not happy. Like being different in this way isn't hard enough! Like we need *another* nasty reminder about how the world sees us.
Here's an angle that might not have been considered by the creators of this campaign:
Victims of real kidnapping and their loved ones...how would this affect them? What would a loved one of a kidnapping victim experience if he or she kept seeing these little ransom notes everywhere. It probably doesn't seem like much, but they could experience flashbacks or revisit some painful memories. Maybe I'm going over the top, but I know I wouldn't be too happy about seeing these things if this had happened to me. It would almost be like a cheap parody or something.
At best, I find this campaign tasteless. At worst, I find it demeaning.
This inspires a "fun" project for myself: To make a list of all of the things said about autism in the media and by others which are like this one.
It could take a few days and would take up a lot of space, but it would be interesting to have all of these things in one place to see, wouldn't it?
Something to do when I have time....