People with Autism "Held for Ransom?" Many Perspectives on this Controversial Awareness Campaign
We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives.Is it accurate and appropriate to describe people with autism as being "held for ransom?" Have their true selves been "kidnapped?" Or is such a description a slap in the face to children and adults with autism who are struggling to maintain their own sense of self-esteem while also acknowledging real differences in social and communication styles?— Autism
SO reads one of the six “ransom notes” that make up a provocative public service campaign introduced this week by the New York University Child Study Center to raise awareness of what Dr. Harold S. Koplewicz, the center’s founder and director, called “the silent public health epidemic of children’s mental illness.”
Produced pro bono by BBDO, an Omnicom agency that worked on two previous campaigns for the Child Study Center, the campaign features scrawled and typed communiqués as well as simulations of classic ransom notes, composed of words clipped from a newspaper.
In addition to autism, there are ominous threats concerning depression, obsessive-compulsive disorder, attention-deficit hyperactivity disorder, Asperger’s syndrome and bulimia. The campaign’s overarching theme is that 12 million children “are held hostage by a psychiatric disorder.”
Naturally, part of the answer lies in personal experience. If you are an adult with Asperger syndrome, or the parent of a child with high functioning autism, you may feel that autism is a difference - but often a positive difference. After all, many people with autism diagnoses are creative, inventive, funny, and extremely intelligent.
If you are the parent of or caregiver to an individual who is non-verbal, self-injurious, and physically ill as a result of autism - you are likely to have a very different perspective.
This difference in perspectives is now being played out through the voices of several major autism bloggers: Kristina Chew, Harold Doherty and Estee Klar-Wolfond.
Kristina is actually cited in the New York Times article:
Kristina Chew, founder of the blog Autism Vox, which has a link to the petition, says that “the reaction has been mostly outrage from parents of special-needs children, autistic adults, teachers, disability rights advocates and mental health professionals.”Harold Doherty, in response, writes“It’s rallied them around one issue, and these aren’t people who normally agree about treating autism,” said Ms. Chew, who lives in Bernards Township, N.J., and has a 10-year-old son with autism. ...
“It emphasizes a lot of negative aspects,” she said. “To say that autism or bulimia has kidnapped a child suggests that these conditions are part of a criminal element. I’m not saying it’s easy to have an autistic child, but it could be framed in a more positive way.”
What she [Kristina Chew] failed to mention were the hundreds of thousands of parents across the United States and Canada fighting to treat and cure their autistic children, parents who, on behalf of the children they love, speak the truth, the whole truth, about autism. And like the campaign organizers at NYU we know that the facts of autism are more upsetting than the provocative imagery used in the awareness raising ransom notes campaign - for most of us anyway.Estee Klar-Wolfond, author of the Joy of Autism blog (and, like Doherty, a Canadian), takes an even more definite stand on the campaign and NYU's assertion that it's simply a good way to gain publicity for a worthy cause:
Not all publicity is good publicity. All we have to remember are the recent mall, church and university shootings to know that. I also think that most of us agree when the rampage of negative campaigning does not reduce stigma -- it only increases ignorance and fear.To be honest, I'm not at all sure where I stand on this issue - in part because I am torn by the extreme breadth of the autism spectrum. On the one hand, of course, there are many individuals for whom the ransom campaign is bound to be insulting. After all, they are functioning individuals with many talents and abilities. Of course, these folks are very capable of expressing their own opinions, and they are doing so every day.
On the other hand - there are many individuals who are accurately described by the campaign. These are the children who developed typically as toddlers, only to suddenly have their abilities snatched away by the age of three. These are the people with autism who are not only "different," but are also physically ill with seizures, GI troubles, mitochondrial disease and more. These are the children and adults who injure themselves; whose sensory issues are so overwhelming that they can't leave the house; who find little joy in life.
What's your feeling about the "Ransom" campaign? Like it? Hate it? Express your thoughts!
Comments
I have great problems with the approach that there’s a “normal” person inside that would “get out” but for the disease that’s stopping them. And who is it that gets to define what the normal is?
Ms Rudy
You have already offered a quote from my comment on the subject and I won’t repeat my views here other than to say that the truth has to be told about the severe challenges faced by some persons with autism disorders and their families.
I thank you for attempting to offer both sides of this issue.
I think the media advertisements are ineffective and to a certain extent misleading.
If a current medical practice caused the following according to Peer Reviewed Journals:
social skills delays at 6 months of age (Dewey, Fleming, Golding, et al.-Pediatrics),
motor skills delays at 6 months of age (Dewey, Fleming, Golding, et al.-Pediatrics),
Increased episodes of sleep apnea (Skadberg and Markestad-Arch Dis Child),
A 500% increase in deformational plagiocephaly (flat head syndrome) (Persing, James, Swanson, et al-Committee on Practice and Ambulatory Medicine)
And peer reviewed journals have stated also that:
motor skills delays are associated with speech and language disorders (Visscher, Houwen, et al- Pediatrics),
sleep apnea is associated with emotional problems and learning disabilites at a 4:1 male to female rate in mild cases and an 8:1 male to female rate in severe cases (McNamara and Sullivan-Chest; O’Connor, Thornley, and Hanly-Am J Respir Crit Care Med; Kaemingk, Pasvogel, et al.-JNS)
deformaitonal plagiocephaly is associated with mental and psychomotor delay (Kordestani, Patel, Gurwitch, et al.-Plast Reconstr Surg. )
If all of these things happened due to a current medical practice you would think that there would be long-term studies done to insure that whatever it helps prevent was worth all of these negative things that it causes. There hasn’t.
All of these negative effects are considered to be “transient” and treatable (Jones-J Perinat Educ). These are all the unintended consequences of the SIDS Prevention “Back to Sleep” Campaign. Personally, I think long-term longitudinal studies shold be initiated to determine if all of these side effects actually are “transient and treatable.” I also think that parents should be informed of the possible negative effects of the “Back to Sleep” campaign and not simply told to put their babies to sleep on their backs. I think doctors should fully inform parents. Others have also mentioned rumors that doctors have said the negative effects of the Back to sleep campaign are worse than reported as have parents in blogs, newspapper articles, and journals (Pelligra, Doman, Leisman-ScientificWorld; Stevens – Flip Side of ‘Back to Sleep’ – O&P Edge)
I personally think that the long-term negative effects of the Back to Sleep Campaign should be analyzed further to make sure that children suffering from these negative effects aren’t inaccurately diagnosed with Autism Spectrum Disorder or PDD-NOS.
The “ransom” notes are patently offensive.
Good intentions gone awry.
Education by negative is not only ineffective, it is generally destructive.
I sent the following email directly to aboutourkids.org:
“As the parent of a son with autism, I find your new ad campaign distasteful and insulting. Parents of children who have these disorders are painfully aware of their children’s conditions and don’t need you to add to their grief and pain. What, exactly, will you be doing to “free” them from disorders which have no cure? Yes, we can and many of us do treat the symptoms with medications, but so far, no one has “freed” our children and you won’t be doing so, either.
The slogan “giving children back their childhood” is crushing to a parent who knows all to well that their autistic child is not enjoying the same childhood as most other children, and never will. Your ad implies that parents are just sitting around waiting for medical professionals to grab them by the ears and make them realize there’s something wrong with their child. On the contrary, it’s most often parents who cannot get medical professionals to listen to them, not the other way around.
I, for one, would very much appreciate you rethinking this ad campaign.”
julie
Kristina and Estee said it all. The whole thing is plain sickening.
The fearmongering is revolting.
“Awareness” has become the indulgence of the 21st century. The get out of sin free card. Do anything you want in the name of “awareness” and it’s acceptable, good even!
Um no. It’s information time. And I cannot believe he invoked AIDS in all seriousness. *I* did it on my blog being ridiculous. He was SERIOUS. The AIDS hysteria lasted HALF as long as the autism hysteria has, too.
Awareness =/= information, and if this campaign is “edgy” it just fell off the ledge.
I think when asking ourselves whether these are good ads, we have to start off wondering what their purpose is, and what their effect will be. I believe judged on both these criteria, the ads are a failure. If it was an attempt to raise awareness or to encourage parents to bring their children forward for evaluation, I believe the ads fail. On the awareness front, the information is so sparse, and reinforces the commonly held stereotypes, that they are useless. As for encouraging parents, most any parent whose child is on the more serious end of the spectrum doesn’t need told this stuff, but those with kids who’re milder will either be scared into denial, or not connect such an extreme example of the condition with their child.
As for what effects the adverts will have, IMO they are likely to bring less tolerance. The “stolen child,” is already a meme that has been fought against in the mental health community precisely because it is so unhelpful, it tends to sigmatise and give a false impression that those suffering from these conditions are not truly human, are a degree removed from the rest of that. This isn’t a good impression to give because it leads to ostracism, intolerance, and attack, the last thing most of us want.
In today’s NY Daily News, Mr. Koplewicz is quoted as referring to autistic people as having a psychotic disorder. Now, whether anyone agrees with the ads (which I don’t because they are dangerously ill informed and unethical) or not, its clear that Dr. Koplewicz only “tool” is to outrage. Autistic people and children do not have a psychotic disorder, that is an entirely different disorder. Its hard enough for adults, most of whom are very timid due to a lifetime of bullying, let alone children to be included in the classroom and the public. This Dr. is dangerous to autistic lives in my opinion. Despite the outrage, the doctor still has not reached out to engage in discussion with any of the disability groups who signed that letter of protest. Instead, he emails the press release from the campaign.
I can understand why some people find the campaign so offensive, and why others believe it to tell their family’s story. The spectrum is simply too wide for an ad showing one narrow view to represent us all. And that’s the real problem. These people are trying to represent the kidnapping metaphor to be the one and only picture of autism.
I get the impression this campaign is designed, basically, to create sympathy for people with these conditions. However I do not think it will succeed – I agree with those who say it will only increase the stigma, and increase the vast gap between “us” and “them”.
I am autistic. It didn’t sneak into my bedroom one night when I was a little girl. It was written into my genes from the moment of conception (I have several family members on the spectrum), and is a part of who I am. You cannot “cure” me without destroying who I am.
I am the parent of a child who was diagnosed with late onset autism, who has significant language difficulties and a learning trajectory that make it unlikely that she will be fully independent, but is a fully included and well loved member of the family who with careful teaching has developed many capabilities even within the challenges. I am also well acquainted with the treatment modalities out there, the state of the clinical trials and the current best outcome rates.
I have another daughter diagnosed with ADHD, who follows the standard treatment model. I am well acquainted with the outcome data and the current caveats for medication, which are corroborated by black box warnings from the FDA. She also has an eating disorder, partially initiated by the stimulants prescribed for ADHD. I am well acquainted with the variety of theories, treatment models, outcome data, and the relapse rate.
I suffer from depression and have since early adolescence. I am acquainted with the with the current prescribed medication regimes, and have some personal experience with the benefits AND the side effects.
I don’t like this ad campaign.
1. The type of attention matters–even if we accept the ads as having a generous premise, does NYU guarantee that our children will be rescued or ransomed from these “kidnappers”? I doubt it, given in some cases extremely variable and unpredictable outcomes based on contradictory professional treatment advice,unless they are hiding something that the rest of the medical community doesn’t know about. So they not only raise ominous alarm, but present somewhat false authority and certain assumptions about practical ability to access, given some tactical issues of health insurance parity or affordability to those programs and treatments with best evidence, even if such are identified.
2. There is the possibility of backfiring on the very population that they claim to want to help. My daughter with ADHD is very concerned by the idea that she is stereotyped as a detriment by anyone, and I tend to see her point of view.
3. I continue to be offended by the attitude from NYU reflected in the NY Times article, which states in sum, that there are persons who are involved first-hand or family members who are offended, concerned,or questioning but full steam ahead, with a response to queries with a paraphrase of the ad campaign.
Well, they have the attention–where’s the dialog and what is the actual content?
FOR AUTISM & PSYCHIATRIC DISORDERS
Posted on 02:43PM (EST) on 2007-12-11
We live in an era marking the ripple effect of “shock jock” performance. Various celebrities have ignited public and media attention with high and very low behavior… to what end? Perhaps the public relations industry takes the “any news is good news” approach.
Given that autism is the “malady du jour”, it strikes my cynical self that there is money in it. Every fly- by- night offer out there is advertised on web sites. The hook is simply waiting to grab needy parents who want so desperately to help their children. The “miracle cure” brigade is integrated with links for medical researchers, when autism is googled. Parents and caretakers are frantic, like the mice on a wheel, going nowhere fast. They are the quintessential target audience, needy and afraid.
Enter NYU Child Study Center . My innate sense of fairness deems this group of professionals to be motivated by noble efforts. I do believe that their shock jock approach to gain national attention, prompted BBDO to write a most compelling advertising campaign:
“We have your son. We will make sure he will no longer be able to
care for himself or interact socially as long as he lives. This is only
the beginning….Autism.”
It takes my breath away. It catches my attention. It stomps on my heart and leaves me with tangible sadness. Wait a minute. Where do I send the ransom? Have I not investigated every intervention? Why am I being charged to save my child, when it has been the pulse of my world for the past 20 years?
Years ago, we raised funds for autism research. Our sign read: “Autism strikes 1 in 166 children….if 1 in 166 children were kidnapped; it would be a national crisis”. That was our shock jock effort. We wanted the world to take notice. We wanted research and awareness. It made sense to alarm, in order to gain attention.
Dr. Harold S. Koplewicz, director of NYU Child Study regards this campaign as a “wake up call” to parents, educators and physicians and mental health professionals. He has engaged BBDO advertising agency to highlight the fact that these children are “stigmatized, under diagnosed and under treated”.
I believe that NYU Child Center’s campaign is aimed at parents. The Ransom Notes Campaign stresses “Don’t let untreated psychiatric disorders take your child”. Given that charge is directed to other disorders as well, autism has been allied with ADHD, Bulimia, and OCD. I maintain that this is a most significant error in NYU’s crusade.
One can’t hide autism. It is preaching to a choir of parents grasping at straws. NYU’s slogan of “Giving Children Back Their Childhood” hardly pertains to numerous parents trying to coax a single word, or diffusing a tantrum. Our joys are fueled by goals our children master with very hard work.
Conceivably this campaign should be aimed at our lawmakers, by changing policy about education and job placement. Possibly the target audience should be the myopic societal views of people with differences. These vistas are ambitious, but more plausible than ransoming the children we are already fighting to save.
I truly find these ads offensive and have made sure to tell those I know.
The 700 autistics in my online forums are banding together to write letters of protest to those responsible for this campaign, and between us all and our connections I think we will win in getting this ad campaign removed.
In one respect, the “Ransom Notes” campaign HAS worked extremely well: It has caused people who have such disgusting beliefs to show themselves in the open. Now people will know which organizations NOT to affiliate themselves with in the future.
“…Conceivably this campaign should be aimed at our lawmakers, by changing policy about education and job placement. Possibly the target audience should be the myopic societal views of people with differences…”
That is a goal worth rallying around. Thanks for making the point Robin H.
Offensive. What on earth were they thinking?!
Interestingly enough, I found this quote in a book: “[quote] … Care must be taken, at least in our nation, that the deadliest enemy is recognized, and that the battle against the enemy is seen as the shining symbol of a brighter day … [end quote]”
I was amazed at how much it sounds like the ‘basis’ for the “Ransom Notes” campaign.
What bothered me about this similarity was that the quote was from “Deutscher National-Katechismus” 2nd edition (Breslau: Verlag von Heinrich Handel, 1934).
For those who do not speak German, when the book’s title is translated from German to English, the “Deutscher National-Katechismus” is the “German National Catechism.” This book was approved anti-Semitic material for all German schools in 1934.
How very sad to see that things have not changed very much in the last 70 plus years.
Asperger Syndrome and Autism do not hold children ransom. The attitudes of certain people hold children ransom.
The police advise that when a ransom is demanded, the ransom should not to be paid. I refuse to pay ransom to organizations such as the NYU Child Study Center and to individuals such as Dr. Koplewicz.
MMaestro and Robin Morris I agree whole heartedly. And Kassiane is right too, awareness doesn’t equal information. The people who concieved and believe in this type of awareness got it wrong from every perspective!
I found an open letter and online petition here.
http://www.petitiononline.com/ransom/petition.html