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
