Introduction

In December 2007, the New York University Child Study Center (NYU CSC), headed by Harold Koplewicz, M.D., launched what it termed a "public service campaign" to raise awareness of various childhood psychiatric disorders, including autism, Asperger syndrome, depression, ADHD, obsessive-compulsive disorder, and bulimia. The campaign consisted of several "ransom notes" posted on large billboards, on kiosks, and at construction sites in New York City and published in Newsweek and New York magazine (Kaufman, 2007)(cripchick, 2007). What follows is the text from the autism and Asperger ransom notes respectively:

According to the NYU CSC, the ransom notes constituted a public service campaign whose intent was to raise awareness of childhood psychiatric disorders. Although the campaign was produced on a pro bono basis by the BBDO agency, the only contact information on any of the produced material led back to the NYU CSC. The NYU CSC website contains links to other clinics in the New York City area as well as a national list of child psychiatrists; however, by having the "Ransom Notes" ads linked to the NYU CSC website — instead of to a national group that does not itself provide treatment — the ads could be seen as self-serving. Some called into question BBDO's connections with Autism Speaks (Wright, S. & B., 2009) and Glaxo Smith Kline (GSK) (Dawdy, 2007), the makers of the drug Paxil. Dr. Koplewicz was a coauthor of the Paxil 329 study, which supported the use of Paxil with teen populations; later, GSK was accused of suppressing suicidal tendencies among the study's participants.

The "Ransom Notes" campaign, however, was not halted by lawyers in a courtroom splitting hairs about whether or not the campaign was intended primarily to raise public awareness or to benefit Dr. Koplewicz and the NYU CSC; it was shut down by a grass-roots internet protest led by self-advocates within the disability community and within the autism community in particular. By December 7, 2009, Ari Ne'eman, president of the Autistic Self Advocacy Network (ASAN), had not only e-mailed various list serves about the campaign — including contact information for NYU and its board of directors — but had posted a sample letter of response on ASAN's website (Ne'eman, 2007b). Shortly thereafter, he created an on-line petition (Ne'eman, 2007a) that rapidly garnered over 1,300 signatures and comments from individuals, as well as representatives from more than 20 different advocacy and disability rights groups. ASAN's complaints were threefold: (a) the ads stigmatize people with disabilities; (b) the ads contain inaccurate information and fail to convey the strengths and successes of those with disabilities; and (c) the ads discourage parents from seeking assistance for their "doomed" children. The NYU Child Study Center initially ignored the protests concerning its ads; however, when they spilled over from the Internet to mainstream media and appeared in the New York Times (Kaufmann, 2007) and Wall Street Journal (Wang, 2007a), Dr. Koplewicz entered into a discussion with Ari Ne'eman and pulled the ads on December 19, 2007 (Wang, 2007b).

The "Ransom Notes" controversy and its resolution highlight some important issues:

• Did the NYU Child Study Center fulfill its obligation to be ethical to both its patients and the public through its public service campaign?
• how and why was the neurodiversity movement able to so quickly stop this campaign? Does its success signify a change from a paternalistic model of advocacy to one of self-advocacy?
• in what ways did the "Ransom Notes" campaign ironically raise the public's awareness of the kinds of adults that children with psychiatric disorders can grow up to be?

The Medical versus the Social Constructionist Model of Disability

The "Ransom Notes" controversy is not the first time mainstream medicine and disability rights groups have disagreed. The two groups have understandings of disability that are largely incompatible. Most physicians have been educated in, and continue to operate from, a medical model of disability. The medical model believes that disability results from an individual person's physical or mental limitations. The problem lies within the person, who is viewed as somehow deficient or abnormal. People come to doctors with a problem, and the doctor diagnoses the problem and prescribes a cure. For most diseases, this model may suffice. For example, a person may present with severe abdominal pain, be diagnosed with appendicitis, and have an operation to remove the appendix.

Applied to disability, however, the medical model can create a distorted view of what life with a disability is like, and it can promote further prejudice against the very people the medical establishment is trying to help. For example, Katherine Hayward (Rosen, 2008) notes that even a symbol of accessibility can be turned into a spectacular warning about the disaster of disability:

Public service campaigns and fundraisers for research often portray the lives of those with disabilities as catastrophic. Harriet McBryde Johnson, a civil and disability rights attorney who died in 2008, organized protests against Jerry Lewis and the annual Muscular Dystrophy Marathon for years. Johnson, who had a neuromuscular disease herself, protested against the Muscular Dystrophy Association's (MDA) use of pity and of sentimentalized children to raise funds (Rosen, 2008). Evan Kemp, who served as the Chairman of the Equal Employment Opportunity Commission under President George H.W. Bush and who was instrumental in helping shape the Americans with Disabilities Act, also criticized the MDA and its chief spokesman, Jerry Lewis:

" — — People with neurological differences have also been described in derogatory terms by the very groups that are supposed to be their advocates. For example, ABFH, an autistic mother of an autistic son and author of the blog "Whose Planet is it Anyway?" shows how the group Autism Speaks has contributed to the negative associations people make with autistic individuals:

In contrast, social constructionists believe disability is created by the attitudes, prejudices, and barriers erected by society not by some problem or inherent deficit within the individual. The lack of accommodations by society, combined with its underlying pervasive prejudices, lead to discrimination in employment, housing, and civil rights. Deafness is an oft-cited example. The medical model of deafness assesses whether the deficit is in the ear itself or in the neural system. Depending on the cause, doctors attempt to fix the deficit with various hearing aids or cochlear implants. The individual's degree of disability is determined by how much of the person's hearing can be regained. Conversely, social constructionists view deafness as a way of being that is not inherently problematic. They contend that deafness is only perceived as a disability because we exist in a society where mass and interpersonal communication — telephones, drive-thru restaurants, televisions, radios, and countless interactions with service providers and coworkers — depend upon hearing. If the majority of people were deaf, TDD, closed captioning, texting and sign language would be commonplace. They argue that society makes adjustments and accommodations for the inherent abilities (and disabilities) of the majority all the time. For example, transportation systems are set up to compensate for the fact that people can't run at 70 miles per hour or fly, but we never really stop to consider these accommodations for our disabilities because the majority of us cannot do such things; therefore, we view our condition as a way of being, not as a deficit, and we consider automobiles, trains, and planes as technological inventions, not as accommodations.

The "Ransom Notes" campaign was based on the medical model of disability. The ads depicted childhood psychiatric conditions as problems that need to be fixed and children with these conditions as abnormal outcasts from society. Their — or, rather, their parents' — -only hope is to pay someone money to get them liberated from their disorder and returned to normal society. From a social constructionist standpoint, NYU CSC's so-called "public service" campaign constituted yet another huge disservice to people with childhood psychiatric disorders, such as autism, Asperger syndrome, depression, and ADHD. A campaign to ostensibly raise awareness and understanding, created by an organization whose "mission [is] to improve the treatment of child psychiatric disorders by eliminating the stigma of being, or having, a child with a psychiatric disorder" (http://www.aboutourkids.org/about_us/overview_history), ,instead served to perpetuate a stereotype of those with mental health issues as isolated, markedly abnormal, and incapable of ever functioning in society.

Ethics and Bioethics

Even from a purely medical standpoint, however, NYU CSC's public service campaign was unethical. Medical advertising is not — in and of itself — illegal. Prior to the 19th century, there were no official constraints placed on medical advertising. In section 5 of the original 1847 American Medical Association's medical code, however, doctors were explicitly prohibited from advertising their services:

This ban on all forms of medical advertising was overturned by the Supreme Court in Goldfarb v. Virginia State Bar (1975) (US Supreme Court, 1975). Since then professional medical organizations have been prohibited from disciplining their members for advertising services, and for the most part, physicians have not reverted to the excesses of the 19th century when wild claims of curing nearly everything abounded. Yes, there are the slick ads of perfect models selling plastic surgery that could easily be confused with a cosmetics ad, but for the most part, advertising for mainstream medical services has been factual, straightforward, and conservative. This is perhaps another reason the Ransom Notes campaign provoked such a negative response. It was not only disrespectful to the people with autism, Asperger syndrome, depression, et al., but it also crossed the line of what was considered tasteful.

Whether one views the ransom notes as a public service announcement or as an advertising campaign is irrelevant; the same ethical standards apply to both. First and foremost, as a psychiatrist, Dr. Koplewicz should adhere to the guidelines of the American Psychiatric Association (APA), which state that all psychiatrists are bound by the ethical principles of the American Medical Association (AMA) (Ethics). The AMA's current code of medical ethics consists of nine principles and is supplemented by over 400 pages of "Current Opinions," published every two years by the AMA Council on Ethical and Judicial Affairs (CEJA) and is available online. Of the nine principles, Principles I, II, and V are the most relevant to advertising and public service announcements. For example, Principle V supports the public dissemination of medical knowledge:

Principle II emphasizes the importance of truthful information and requires a physician to "be honest in all professional interactions and strive to report physicians deficient in character or competence or engaging in fraud or deception, to appropriate entities" (CEJA, 2008). Based on this principle, any advertisements with as many falsehoods as the Ransom Notes campaign would be judged unethical by a professional review board. Perhaps most relevant to this case, Principle I requires a doctor to "provid[e] competent medical care, with compassion and respect for human dignity and rights" (CEJA, 2008). Further elucidation of these principles can be seen by reviewing CEJA's Opinion 9.123, which states, in part:

Few relationships in medicine are as intimate as the one between psychiatrists and their patients. By design, people tell their psychiatrists some of the most personal facts regarding their lives, facts they often do not reveal even to their own families. This intimacy with the medical practitioner sets up a power differential that necessitates a large measure of trust on the part of the patient. The Ransom Notes campaign represented a betrayal of the highest order by the people who should have understood this necessity: psychiatrists.

These passages, taken from the medical profession's own guidelines, support the allegations made by ASAN and other disability rights groups. These groups appear to be standing on very solid ground when they accused Dr. Koplewicz and the NYU CSC of running public service announcements that promoted untruths, disrespect, and distrust. Since the 1970s, significant strides have been made to decrease the stigma associated with mental health issues; in designing the Ransom Notes, the BBDO agency — and by extension, Dr. Koplewicz and the NYU CSC — seemed not only oblivious to these important advancements but intent on returning to an age of stigma. At the very least, they totally ignored the opinions of those who have the conditions depicted in the ads. After all, the ransom notes motif depicts those "afflicted" with psychiatric disorders as kidnapped. Depicting children with disabilities in this way conjures up medieval images of changelings, abnormal beings who were substituted for so-called normal children, as Susan Schoon Eberly has pointed out in her article, "Fairies and the Folklore of Disability: Changelings, Hybrids, and the Solitary Fairy":

Kristina Chew, a classics professor and mother of an autistic son, similarly characterized the Ransom Notes campaign in her December 5th blog post:

Clearly, we need to eschew this understanding of childhood psychiatric conditions. Beauchamp and Childress's (1994) so-called "Principles Method," described by them in their classic text on bioethics, provides a general rubric by which to measure the Ransom Notes campaign. This method weighs ethical concerns according to the principles of autonomy, beneficence, nonmaleficence, and justice.

The issue of autonomy concerns both the intended object of the ad and its targeted audience. In the case of the Ransom Notes campaign, this would include children with mental health issues and their parents. Relying on melodramatic stereotypes and caricatures, the ads portrayed children with childhood psychiatric disorders as something they are not: captured, kidnapped, trapped, and incapable of caring for themselves. Such depictions encourage further stereotyping and social isolation and undermine the ability of those depicted in the ads to function autonomously within society. Furthermore, not consulting those who are depicted in the ads renders them targets to be exploited for monetary gain rather than autonomous partners in a therapeutic relationship of mutual respect or, even more important, self-advocates whose insight and self-awareness can responsibly inform the public of the issues and challenges they confront. Consultation did not occur in this case. The ads, which inaccurately characterize these disorders as totally debilitating, also undermine the parents' autonomy. Rather than presenting clear, balanced facts for parents to consider, they induce a state of panic and then offer the parents a solution to their problems: namely, the NYU CSC.

Beneficence and non-maleficence are two sides of the same coin. "First, do no harm" is one of the oldest principles in medicine. Dr. Koplewicz and the NYU CSC argued that the ads would result in more parents seeking assistance for their children. Critics argued, however, that perpetuating stereotypes of people with psychiatric disorders would have a negative effect no matter what medical treatment they receive. Therefore, if medical professionals can get these children assistance without stereotyping them as helpless and childlike, they are ethically obligated to do so.

Justice implies fairness, truth, and balance — all of which were lacking in the Ransom Notes campaign. The hopelessness and many of the assertions about the disorders (e.g. that those with autism spectrum disorder would never be able to care for themselves) are patently untrue. While sensationalistic messages attract attention in advertising, in this case by emphasizing and amplifying only the negative aspects of the psychiatric disorders, they do not provide a fair picture of their subjects, which they are ethically obligated to do.

Douglas Brown, an ethicist at Barnes-Jewish Hospital in St. Louis, Missouri, asks, "What do we invite patients and families to trust?" (Brown, 2006). As we can see in Figure 1 (Brown, 2006), even when one views psychiatric, neurological, and developmental disorders from a purely medical viewpoint, there are numerous ethical problems with the way the NYU CSC depicted their current and potential patients in the Ransom Notes campaign. There was no consideration of the patient's viewpoint, no apparent consideration of the potential harm to patients through increased discrimination and ostracization, and no commitment to respecting the patient.

The Neurodiversity Movement's Response

Although the Ransom Notes campaign began and ended in New York City, the response to the campaign came from around the world. Ari Ne'eman and ASAN used the speed and penetration of the Internet to forge alliances with other disability rights organizations to quickly shut down the Ransom Notes campaign. As important, they foregrounded the neurodiversity movement's evolution away from a paternalistic model of advocacy to one of self-advocacy. Before examining the crucial role of self-advocates in this struggle, a brief look at the relationship between the Internet and the disability rights movement generally is in order.

The Internet and the disability rights movement have traveled parallel paths. In 1995, only .4% of the world's population had access to the Internet. That number increased to 5.8% in 2000 and to 21.9% in 2008 (http://www.internetworldstats.com/emarketing.htm). In North America, that number grew to 74.4% in 2008 (http://www.internetworldstats.com/emarketing.htm). Along with the increased accessibility of the Internet came the rise of online journalism. Beginning in the mid-1990s, mainstream news sources, such as The Wall Street Journal, The New York Times, The Chicago Tribune, and CNN, began establishing a presence on the web. Initially, these online news sources were available by subscription only, but by the turn of the 21st century two major changes in online news reporting had taken place. First, the revenue model changed from subscription-based to advertisement-based, which significantly increased the number of people viewing these news sites. Second, instead of simply reproducing what their mainstream counterparts were reporting, online news sources became semi-independent and were able to include many more stories than their mainstream counterparts. As a larger percentage of the population gained access to the Internet, more and more people, especially younger people, began to rely on it as their primary news source. The availability of inexpensive software and free hosting services fueled the rise of blogs, where anyone with anything to say could broadcast his or her views to the world. With virtually unlimited space, reporting was also no longer limited to topics of general interest.

Disability rights groups have similarly evolved. Although there were some organizations that undertook advocacy on behalf of disabled individuals early on, the number of these organizations in the US increased significantly in the 1970s, following the Civil Rights Movement. By the time of the Americans with Disabilities Act in 1990, there were not only many more such organizations, but self-advocates held the primary leadership positions within them. Of course, this was much less true of autism, but eventually autistic self-advocates rose to the fore here as well, if only in organizations that competed with eminent national organizations characterized by an obdurate paternalism and a pathological view of neurological difference.

Significantly, autism began to be more widely diagnosed in the 1990s. Some have attributed this rise to an "epidemic," while others, such as Morton Gernsbacher, have argued that "no scientific evidence indicates that the increasing number of diagnosed cases of autism arises from anything other than purposely broadened diagnostic criteria, coupled with deliberately greater public awareness and intentionally improved case finding" (Gernsbacher, Dawson, and Goldsmith, 2005). Whatever the case, most identified autistics are younger than the general population, and, finding the Internet a comfortable place to be social, they are thus quite active online. Accordingly, self-advocacy groups have followed them there.

Although the neurodiversity movement had existed for some time before the Ransom Notes campaign, the movement's effective protest of the campaign greatly increased the group's visibility. The Autistic Self Advocacy Network (ASAN), which spearheaded the response to the Ransom Note campaign, was founded by Ari Ne'eman in 2006. Ne'eman (personal communication, March 2009) was quick to point out that the neurodiversity movement did not start with ASAN; rather, "the advocacy work of ASAN owes its existence to the work done by Jim Sinclair and the Autism Network International (ANI). The self-separation that ANI had from the 'parent world' provided an opportunity for cultural development." Like the wider disability rights movement, the ND movement's primary tenet is "nothing about us without us." The strong, coordinated response by autistic self-advocates and others helped to transform ideas into action and served notice to autism professionals that autistics need to be consulted when there are issues that concern them. This shift from parents' rights and concerns to self-advocates' rights and concerns is a crucial one that the BBDO agency and the NYU CSC failed to acknowledge.

The proliferation of articulate and witty responses by self-advocates speaks for itself. Bev, an autistic blogger, created her own ad (See Figure 2) (Harp, 2007). Mike Stanton, a blogger at Action for Autism in the UK, used the medical profession's own language to point out the absurdities of the campaign:

Although a majority of the responses came from the autism community, there were also many responses from others in the broader disability rights community. Stephen Drake, from the organization Not Dead Yet (an organization that protects disabled individuals from euthanasia and coerced assisted suicide), blogged against the campaign, as did the American Association of People with Disabilities (AAPD), Kay Olson of the blog The Gimp Parade, Cripchick, and many others (Drake, 2007; "Ransom Notes", 2007; Olson, 2007; "cripchick", 2007).

Even those responses written by parents of people with autism, such as Kristina Chew, and Vicki Forman, eschewed the paternalistic message of some parent support groups for the self-empowering message of the Neurodiversity Movement. For example, listen to the balance and respect evident in this note by Mom-NOS:

After literally thousands of individuals sent emails to and called NYU in protest, the mainstream media picked up the story. On December 14th, the New York Times published an article entitled "Campaign on Childhood Mental Illness Succeeds at Being Provocative." In it, Dr. Koplewicz reportedly stated that "there was some discussion about dropping its [the Ransom Notes] two most controversial components: the autism and Asperger's ads," but that "he decided to retain the ads after conferring with colleagues whose attitude he said, 'was that some people would be upset but that we should stick with it and ride out the storm'" (Kaufmann, 2007) (italics added for emphasis). This response, with its lack of insight into what the various groups found offensive — indeed his choice to confer with his colleagues rather than those who raised objections to the ads — only served to further energize the opposition. The next day, ABFH posted the following on her blog:

Her post reflects the united front of the disability rights movement. She also posted a link to a positive ad campaign for those with disabilities to illustrate that there were viable alternatives to the negative stereotyping of the Ransom Notes.

On December 19th, five days after saying he was going forward with the ad campaign, Dr. Koplewicz and NYU pulled all of the ransom notes. In an editorial following the incident, Dr. Gregory Fritz (a friend of Dr. Koplewicz's) wrote the following:

Although Dr. Koplewicz had not really apologized, the ads had been removed, and activists were willing to give him another chance when he announced that the NYU Child Study Center would host an online town hall meeting to discuss child and teen mental health in the first few months of 2008. The forum was held on February 26th. There were complaints at the time that certain questions were being "filtered out" during the online forum, but afterwards the complete transcript was posted on the NYU CSC website ("Thanks to All", 2009). Initially, the NYU CSC promised a new ad campaign within three to six months; however, over a year after the Ransom Notes campaign ended, the Center had still not issued any other public service announcements.

Despite these persistent gaps in understanding from the NYU CSC, the online buzz created by the ND movement spilled over into the mainstream media enough to inform the general public that self-advocates abound within the Disability Rights Movement, individuals whose very existence points out the falseness and absurdity of the Ransom Notes campaign. Various disability rights groups realized they had more in common than they once thought and that their combined voices produced results. ASAN, for its part, has not only strengthened existing relationships with other disability rights organizations, it has also forged new ones. It continues to confront injustice: proposing anti-bullying legislation in Maryland, the closure of several institutions in New Jersey, and a Medicaid waiver program for autistics in Pennsylvania. In January, 2009 ASAN and other disability rights advocates met with President Obama's transition team to provide recommendations. ASAN proposed action in three areas: adult support services, a balanced research agenda, and abuse prevention (personal communication, March 2009). When asked about the Neurodiversity movement after the Ransom Notes campaign, Ne'eman said the following: