What an Autism Organization Should Be?

Sullivan, over on LBRB, recently blogged about a new program targeting autistic adults at Boston's MGH hospital. This program has been made possible by a generous endowment from the Nancy Lurie Marks Family Foundation. According to the article,

Her (Nancy Lurie Marks) gift to Mass. General will pay for a range of new specialists and programs, including an electronic patient data repository for research, adult neurologists, social workers to help adults find work and housing, and a communication program to evaluate children and adults for devices such as computers that produce speech when a patient types on a keyboard. Bauman, who founded the hospital’s multidisciplinary LADDERS program for children with autism, will become the MGH Distinguished Scholar in Autism, an endowed position, as part of the gift.

I had never heard of this foundation before, so I went to their website. There I found that the organization had been around since 1977, and according to the "About NLMF" section,

The primary mission of the Nancy Lurie Marks (NLM) Family Foundation is to help people with autism lead fulfilling and rewarding lives. The Foundation is committed to understanding autism from a scientific perspective, increasing opportunities and services available to the autism community and educating the public about autism.

When they're not supporting research and services to autistic individuals, the foundation has also sponsored documentaries such as "Autism is a World" and "Voices of Vision: Quality of Life for People with Disabilities: Equity, Opportunity and Inclusion".

Now, this organization probably isn't perfect. Not everyone would be in favor of everything they do. Some of their research money supports genetic investigations, and some of their money has gone to support investigations using ABA type therapy. But in going through their website, what is notable is what is NOT there. No movies moaning how horrible living with someone with autism is. And no hedging regarding vaccines, mercury, or whatever other voodoo people want to ascribe autism to.

In fact, the overall impression I get from reading through the Nancy Lurie Marks Family Foundation website is that we've regressed as a society since 1977. Because evidently back then people set up foundations that respected individuals and wanted to work to help them succeed, as opposed to more recent times when people set up organizations to create "awareness" of how miserable autistics' lives are, and to support all of the non-scientific voodoo out there to "cure" autism.

The Letter I've Written

photo credit-JasonRogersFooDogGiraffeBee's photostream
creative commons license

I know that in one sense, the York, PA ASA billboards that I wrote about in my last post pale in comparison to the ad campaign wrought by the NYU CSC in 2007. But that still doesn't mean that I can't attempt to change what I consider to be an insult to my son, as well as other autistic people.

So here is the text of the letter that I sent today:

--------------------------------------------------------

Dear Sirs/Madams:

As the father of a child on the autism spectrum, I am writing to express concern about the York, PA ASA chapter’s billboard campaign that associates autism with being kidnapped. I happened to notice one of your billboards while taking a vacation in Pennsylvania. This campaign is reminiscent of the 2007 Ransom Notes campaign that was undertaken (and subsequently removed) by the NYU Child Study Center in New York City.

Comparing people with autism to those who are kidnapped is not only factually wrong (my son hasn’t been kidnapped, he’s right here in front of me), but is demeaning and offensive to those who are autistic. Rather than “creating awareness”, I can only see the logical end result of such an ad campaign be one of creating fear, misunderstanding, and disrespect towards those who are autistic.

In Medieval folklore the image of a changeling was used to describe children with then misunderstood medical disorders or developmental disabilities. Fairies or trolls were thought to have kidnapped the “normal child” and left the changeling in its place. One would think that in the 21st century we could get past such folklore, and deal with reality.

Putting up ads that show such disrespect towards autistics will certainly not result in greater acceptance and integration in either the school environment or the community. As an organization that ostensibly has been set up to serve the needs of the autistic community, I urge you to immediately remove the ads. Furthermore, I strongly encourage you to consult with autistic self advocates before formulating future ad campaigns.

Thank you for your time, and I hope to hear from you soon.


Sincerely,

-------------------------------------------------------

As ABFH was kind enough to point out, the address of the York, PA ASA chapter is:

pa-york@autismsocietyofamerica.org

And the contact person is Amy Wallace.

Now Comes the Hard Part

Like many in the autism related blogosphere, I rejoiced yesterday when I heard that the NYU "Ransom Notes" campaign had been pulled by its director, Dr. Harold Koplewicz. I had blogged about my ethical concerns with this campaign, and felt that the campaign demeaned those who had those conditions, and would only further continued ostracizing and marginalizing by the public at large.

It is a huge thing for someone to stop an ad campaign that is just getting underway. I am sure that there were a lot of people that had a lot invested in designing and implementing that campaign, and it was hard for them just to scrap it. It is a testament to Ari Ne'eman's astute perception of the exact tone to strike in opposing this campaign, and his organizing prowess that this victory took place.

At the same time, I give Dr. Koplewicz credit for his part in this. Having launched a big campaign, and after reviewing the large outpouring of negative comments, he was willing to not let his ego stop him from doing what was the right thing. As I stated in my original post, there is much in his past stated comments, as well as publications, to think that he is not the enemy of autistics and others with various conditions. When someone stops, apologizes, and asks for input, I think they deserve the benefit of the doubt.

I think it is a major step that Dr. Koplewicz proposed a "town hall" forum that would include viewpoints of all the stakeholders of the campaign.

Now that the "relatively easy" part of objecting to what was obviously a very negative and hurtful campaign is over, the real work needs to begin. It is much easier to protest than to come up with positive and catchy slogans and ad campaigns. I have great hope that there are many very creative individuals within the disability community that will help in designing a campaign that all can be proud of, and that will be effective.

On another front, as has been mentioned elsewhere (here and here), The National Institute on Mental Health issued a "Request for Information" asking for input into what kind of autism research should be funded. The deadline for submissions is near (Jan. 4th). Responses need to be limited to two pages, and response needs to be to a particular e-mail address (iacc@mail.nih.gov).

So put on your thinking caps quickly, get your thoughts together, go to Kathleen Seidel's site to see the entire proposal, and get your submissions in. We all need to make positive contributions to let people know what we expect from our government and private sectors.

Ethics-Easier Said than Done

Although I consider myself a good general physician, as well as being very good in my chosen specialty, I am neither a psychiatrist nor a pediatrician. Since this blog deals a lot with issues concerning autism, I don't usually put on my "doctor" hat here. But sometimes some subjects get to me not just as the parent of my autistic son, but also as a physician.

The recent episode of the NYU Child Study Center's (together with its director, Dr. Harold Koplewicz) "Ransom Notes" campaign raises serious ethical concerns that I think need to be addressed. Kristina Chew over at Autism Vox summarized many of the excellent responses by the autism community to these ill conceived ads. I'm going to address this purely from the perspective of a fellow physician.

I have always considered the ability to practice medicine a privilege that is granted me by society. Having been granted that privilege, I, like all physicians, have certain responsibilities towards not only my own patients, but also to society in general.

The American Medical Association, as one of the major professional associations of physicians in the US, publishes Principles of Medical Ethics which all physicians are expected to adhere to. I'd like to take a few minutes here to review some of what is stated in that document. Here's one section that I found:

E-9.123 Disrespect and Derogatory Conduct in the Patient-Physician Relationship



The relationship between patients and physicians is based on trust and should serve to promote patients’ well-being while respecting their dignity and rights. Trust can be established and maintained only when there is mutual respect.

Derogatory language or actions on the part of physicians can cause psychological harm to those they target. Also, such language or actions can cause reluctance in members of targeted groups to seek or to trust medical care and thus create an environment that strains relationships among patients, physicians, and the health care team. Therefore, any such conduct is profoundly antithetical to the Principles of Medical Ethics. ...

On its website NYU's Child Study Center (CSC) gives good lip service to subscribing to the above principle:

Our key goals include:

* Increasing the body of scientific knowledge about child mental illness
* Eliminating the stigma of being or having a child with a psychiatric disorder
* Improving the practices of professionals serving children
* Influencing child-related public policy

How does that square with the "Ransom Notes" campaign, where they have ads such stating things like:

We have your son.

We will make sure he will
not be able to care for
himself or interact socially
as long as he lives.

*This is only the beginning.

Autism

Now I might expect something like the above ad twenty years ago, or perhaps now from someone who is totally ignorant regarding current concepts in autism. But from a major medical center's Department of Child Psychiatry? Never. Such rhetoric is blatantly wrong, totally derogatory, and sure to increase discrimination against all autistics. To hide behind a justification of "increasing awareness" is disingenuous at best, and outright lying at worst.

The "Ransom Notes" campaign is all about publicity. Whether it's viewed as primarily advertising for NYU's CSC (which I do), or as a public service message, the following section of the AMA's Principles of Medical Ethics addresses this point.

E-5.02 Advertising and Publicity


...Aggressive, high-pressure advertising and publicity should be avoided if they create unjustified medical expectations or are accompanied by deceptive claims. The key issue, however, is whether advertising or publicity, regardless of format or content, is true and not materially misleading. ...

Again, the gross factual inaccuracy of the description of autism renders this ad unethical.

When it comes to Psychiatry, the World Psychiatric Association also has some things to say regarding ethics. This comes from them commenting on psychiatrists and the media:

• Psychiatrists addressing the media. The media has a key role in shaping the attitudes of the community. In all contacts with the media psychiatrists shall ensure that people with mental illness are presented in a manner which preserves their dignity and pride, and which reduces stigma and discrimination against them. An important role of psychiatrists is to advocate for those people who suffer from mental disorders. ...

Keep the above in mind while reading this:

We have your daughter.

We are making her wash her hands until
they are raw, every day.

This is only the beginning.

-OCD
----------------------------

We have taken your son.

We have imprisoned him in
a maze of darkness
with no hope of ever
getting out. Do nothing
and see what happens.

-Depression

Preserving dignity and pride? Reducing stigma and discrimination? Not in my book.

Now from Googling Harold Koplewicz and reading about him, before this I wouldn't have thought him a bad guy. He's written several books, including one titled "It's Nobody's Fault:New Hope and Help for Difficult Children and Their Parents". He's a Vice Dean, Full Professor, and Department Chairman at a prestigious university, and has received numerous awards from various groups, and has appeared often on mainstream media. He's not some fly by night practitioner of woo that I would expect such claptrap from.

But now I'm going to address the good doctor directly.

Harold, I may be a simple country doctor in flyover country, but I gotta tell ya. Your reputation alone isn't going to get you thru this one. It's time to "man up", take the hit, and admit that you got this whole campaign totally wrong. Everyone can make a mistake, and you made a big one. Being "edgy" doesn't cut it when the ads going out in your name are full of untruths and are frankly unethical in their demeaning portrayal of those with a variety of conditions. Accept responsibility, apologize sincerely, and go on. Do so, and people will listen and be willing to start a dialogue with you. Keep delaying, and this will only get bigger. You've succeeded in uniting and galvanizing widely disparate groups of people against this campaign, and secondarily against you.

Be the physician your record would indicate you have been. Do the right thing.