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Dopameme Combination of the name of a neurotransmitter in the brain involved in feeling pleasure, "dopamine", and the term "meme" as coined by Richard Dawkins meaning a thought virus. A "Dopameme" is a feel-good idea which:
forms part of a belief system (like "new age" notions or pseudo/antiscience)
keeps people from learning to see the world rationally
stubbornly persists through generations, because the emotional comfort or pleasure it provides the person who harbours it ensures it will be replicated frequently in that individual's brain and easily passed on to others via social and conversational contact
gets recycled endlessly through books sold at spiritual and self-help bookstores, thus helping support the economy, thus further ensuring its continued survival
The American Psychiatric Association (APA) publishes the Diagnostic and Statistical Manual of Mental Disorders, a project that has grown from a slender volume (the first edition, in 1952) to a multi-pound behemoth (the most recent, the fourth). The fifth edition, or DSM5, is in the works -- to a great amount of controversy.
One blogger who has been reporting on the controversy is the well-regarded Suzy Chapman, whose site was until recently titled DSM5Watch.wordpress.com. It is no longer. In response to legal threats from the APA, she was obliged to rename her blog. What's worse is that DSM5Watch.wordpress.com doesn't even redirect to the new blog, dxrevisionwatch.wordpress.com.
On December 22, with just one working day left before offices closed down for the Christmas and New Year holidays, I received two communications from the Licensing and Permissions department of American Psychiatric Publishing, A Division of American Psychiatric Association, informing me that the unauthorized use of the DSM 5 mark in my domain name is improper and in violation of United States Trademark Law.
I was advised that my actions may subject me to contributory infringement liability including increased damages for wilful infringement. I was requested to immediately cease and desist any and all use of the DSM 5 mark, remove the DSM 5 mark from my domain name and provide documentation confirming I had done so, and that any further use would be considered an infringement.
Given the difficulties of liaising from the UK with American Psychiatric Publishing and with my Californian based site hosts, WordPress, over the holiday and mindful of the implied consequences should I delay taking action, I considered I had little option but to change the site’s domain and title.
I am not an attorney or in any way educated in the legal system, but this seems to me to be intimidation, pure and simple. Chapman accepted no advertising nor generated any revenue from the defunct DSM 5 Watch site or the new dx Revision Watch site.
Responses in the blogosphere (as usual, I will be updating
"I am surprised and saddened by APA's ill-conceived attempt to restrict Suzy Chapman's free expression on DSM 5. It can only be in the service of the equally unworthy goals of censorship and/or commercialism."
"In a democratic society, healthy dissent and debate is part of the package. It may be annoying, but that doesn't excuse the bullying tactics that the APA has chosen."
"The American Psychiatric Association (APA) is in the news again for bad public relations: worse than bad, actually – appalling. Locked in a bunker mentality, they have moved to stifle advance criticism of their flagship initiative, DSM-5"
"To try to shut down and stifle criticism because one hopes to make money off one's product is commercialism and not professionalism. That the APA appears to be acting in this crassly commercial manner would seem a severe indictment of what sorts of people are allowed to manage so-called "professional" medical societies in these times."
"now an aggressive attack on a web-site based on a trivial [and probably unenforceable] trademark claim suggest that the Task Force and APA at large believe that the position of the DSM as the definitive last word in Mental Health diagnosis is assured – a position of power that gives them the right to act like an imperious ruling class. That is hardly the case."
"The field of psychiatry is doing itself no favours by using intimidation tactics against people that criticize their opinion, let's face it, the whole premise of psychiatry is based on opinion"
"This entire fiasco has the potential to become a huge embarrassment to the field of psychiatry. I guess I can understand why the APA might wish to protect its intellectual property, but the idea of “picking on the little guy”—especially when the “little guy” is simply keeping readers informed about developments in our field of (supposedly) intellectual, scientific endeavor—makes me ashamed to think that these men and women speak for me."
"What an appalling abuse of power for the lobby group that calls itself the American Psychiatric Association and reaps the millions of dollars in profits from the DSM to try to shut up some woman in the United Kingdom."
"You might be wondering why the APA registered DSM-5 as trademark – which is a legal device to protect against other people making profit from your good name – and why they are using it to bully critics."
"These efforts took a strange turn, one that shows for once and for all that the APA is a corporation, and like every corporation, will put its interests and those of its stakeholders over the interests of everyone else."
"Why the APA would make themselves into a Goliath is not clear to me. The DSM offers Paranoid Personality Disorder, but this episode makes me wish Frances hadn’t shied away from his proposal for a Self-Defeating Personality Disorder. Because it is not clear to me how they win this one. Not that I really care, at least not about the APA’s fortunes, but are they trying to prove Frances right about his recent, somewhat incendiary, claim that the APA no longer deserves the DSM franchise?"
"All of us owe great thanks to Ms. Chapman and to the Internet community whose ringing endorsement has allowed her not only to maintain, but also to enlarge, her readership. Ms. Chapman will continue to provide the field with the most current and most accurate reporting on DSM 5 during its endgame. I strongly recommend her website as the best clearinghouse for information on DSM 5.
I join Ms Chapman in hoping that this embarrassing episode will discourage APA from all future efforts at abusive censorship—whether they are related to trademark, copyright, or confidentiality agreements. The field must remain vigilant in its efforts to contain APA commercialism and persistent in trying to penetrate APA's secrecy and inbred decision making. APA must finally come to realize that DSM 5 is an open public trust, not a private business enterprise.
You may want to follow Suzy Chapman at Twitter: @meagenda
The organisation that I stumbled across is called Siberian Snow Babies. The program began many years ago, when a family, who bred and trained dogs, learnt of the impact that the dogs had on their daughter who was born with an ASD. They decided to train one of their dogs, to specifically suit her individual requirements. After doing so, her progress skyrocketed, and an organisation was born.
Siberian Snow Babies, trains Siberian Husky’s and Alaskan Klee Kai’s. Using these two types of dogs has many benefits. They are free of any types of dog odour, which can turn some people off. They have a unique metabolism, which means they are more cost effective, when it comes to feeding them. They require less exercise than other small to medium sized dog breeds. They are highly intelligent.
Dogs have been linked to sniffing out cancer and other undetectable scents, with their super sensitive noses. The Siberian Husky and the Alaskan Klee Kai who undertake training with Siberian Snow Babies, are trained to recognise a hormone in humans, called cortisol, which is released when someone is experiencing stress....
Siberian Snow Babies also offers a unique payment option, so families are able to pay off the cost of the dog over the duration of the training period, which can take one year or longer. This gives the family time to organise funds if required, through a charity for example.
(aside: these claims, which may or may not be from Siberian Snow Babies, sets off alarm bells for me. I know a bit about service dogs and dog temperament; spitz-type dogs generally aren't selected as service dogs. The Klee Kai is a breed developed in the 1980s by a single breeder, who was selecting for size and temperament, not suitability as a service dog.)
Then, Kaydus, as Animals for Autism signed up to be in the May Pepsi Refresh Challenge, to raise $50,000 and award service dogs to 10 families. Kaydus recruited prospective autism service-dog families to vote for her project:
Animals for Autism emailed us 20 codes a day, sometimes more for us to use on our own computers. This went on for the entire month of May. Although I was a bit baffled by how they were coming up with so many codes, I was more than happy to help.
Hal and Amy Johnson of Brockport, New York, that their son, Rex, had been chosen as the recipient of a free Autism Service Animal! James, the service-dog-in-training, will spend the next 12 months in an intensive program designed to meet their son's specific needs.
On June 6, Kaydus announced:
LM Kaydus, founder of Animals for Autism is pleased to announce finalist-status for a $50k grant in the Pepsi Refresh Everything Program. All finalists will be notified by June 23 whether or not they have achieved "winner" status. Should that come to fruition, up to ten (10) FREE autism service animals will be placed with children and adults in need in the United States.
Families were even more excited. Some families made down payments in the hopes that they would be selected to receive a free dog. Donations were made to Animals for Autism on behalf of the families.
On June 30, 2011, a press release from L.M. Kaydus announced the 10 families that would receive the dogs, and said that the dogs would be placed "in the summer of 2012". Kaydus emailed photographs of the selected puppies
When the recipients were announced in July along with a picture of their matched puppies, each family was overwhelmingly honored and grateful for what this meant to their family. A lifeline had been thrown in the form of a tether to a Siberian Husky.
The original application approved in moderation was a one line budget requesting $50,000 to train autism service dogs. Because this was such a broad application and one that Global Giving (the company that runs the Pepsi Grant) could not approve for her project, they thought it would make more sense for her to use the grant funds for tangible items related to her project, including vests and collars, a physical training facility, grooming stations, and more. Her grant agreement that was signed and approved by Global Giving shows these 20+ line items. She moved her budget towards the tangible, per our request, to avoid issuing an individual a check for $25,000 to pay for less material costs, such as staff. All of these expenses for her project went both directly and indirectly towards the dog training costs.
From Global Giving and Pepsi's point of view, that grantee was in compliance with her grant agreement and her original application. The story that you sent was around the original project describes exactly what GlobalGiving and Pepsi approved in our due diligence process.
The Pepsi Refresh funds were disbursed to all awardees through Global Giving:
GlobalGiving is a charity fundraising web site that gives social entrepreneurs and non-profits from anywhere in the world a chance to raise the money that they need to improve their communities. Since 2002, GlobalGiving has raised $57,691,748 from 248,097 donors who have supported 5,202 projects.
Over the summer of 2011, one of the families awarded a dog began to question the whole program. The breed provided by Animals for Autism was not well-known to be a good service dog, the dog provided was going to be quite young, the puppies selected were promised to families before they were old enough to be evaluated for suitability as service dogs...other things just sounded hinckty. So that familywithdrew from the program.
Others in the program also began to question. By the fall, the wheels had come off:
At the same time, Animals for Autism’s website disappeared and they seemed to disappear entirely. Although they were supposed to move to a new location, nobody seemed to know where that was. We checked with the post office… no forwarding address. We checked with the animal control for the county they lived in and the county they were supposed to move to… no dogs were registered to them. We called autism agencies in the area… nobody ever heard of them. So, we contacted the IL Attorney General and the Better Business Bureau. They sent complaints on our behalf. The deadlines came and went with no response.
I have made contact with the Internal Revenue Service, the State Department of Illinois, the Illinois Attorney General, the Illinois Department of Agriculture, the Better Business Bureau of Central Illinois, Springfield Autism Resource Center, The Autism Program of Illinois, Members of Sangamon and Menard Country Animal Control, my Naval Legal Services Office (AFA ignored their letter for information), program managers for the Pepsi Refresh Everything Project
The outcome? Nada. Zip. Nothing. Pepsi Refresh doesn't appear to care that they may have given out $50,000 under false premises to an individual. Global Giving doesn't seem to care that the funds they disbursed didn't go for the project advertised.
But the real bad ending is for those 10 families, who so wanted a service dog for their children with autism. As one of the fathers wrote in a comment:
As one of the 10 families involved I can not put in the words how saddened we are about this. When several months went by without updates I started having doubts, that something so good could actually be true. It saddens me how an organization could use 10 families with autistic children to benefit only themselves and how Pepsi could just turn a cheek and not care.
The families awarded a service dog:
The W. family of Springfield, Missouri
The S. family of Cedarburg, Wisconsin
The P. of Lee Center, New York
The S. of Williamsburg, Ohio
The P. family of of Tallahassee, Florida
The d. family of Mt. Orab, Ohio
The C. family of Silverdale, Washington (this is the family that withdrew in August)
The A. family of Clovis, California
The B. family of LaVergne, Tennessee
The R family of Howard, Ohio
Sources (I will be updating this list silently as I find more resources):
Andy Wakefield, the infamous UK physician struck off for the "callous disregard" with which he treated his child patients, has filed a defamation suit against The British Medical Journal, UK journalist Brian Deer, and the BMJ's editor, Fiona Godlee. A copy of the complaint can be read here: http://www.courthousenews.com/2012/01/04/BritMedJ.pdf. The litigation was filed January 3, 2012.
As I often do, I'm keeping a running list of posts discussing the litigation. I will be updating it silently as time passes.
Discussions of the litigation from folk who regard Wakefield as a discredited former physician:
1/6/12 Age of Autism posted the first six paragraphs of Ian Sample's Guardian article; the comments are expression of support. (Note: comments at Age of Autism are heavily moderated).
Actually, it doesn't. It means the program is working as it was designed to do. No medical intervention is without risk, including vaccines. There have been, and there will be, people who suffer permanent, significant, adverse consequences from vaccination. The rate of such injury is about 1 per million doses of vaccine.
I estimate that there have been more than 1.8 billion doses of vaccines administered to children six and under since the program began. The average ratio of vaccine awards per million doses of vaccines is...1.3. By my estimation, the awards amount to about $0.99 cents for every vaccine administered. Here are the calculations (click to embiggen)
Estimated number of vaccines administered:
I set the uptake rate at 90%, which is artificially low, and derived the live birth numbers vaccine schedule from sources listed at the bottom of the post. Note that this estimate is only for pediatric vaccines administered from birth through age six, ignoring the later pediatric, adolescent, and adult vaccines. So there's a significant undercounting of the actual number of vaccines administered.
Awards per dose of vaccine administered:
Remember, we are only counting pediatric vaccines here, so the number of doses is underestimated. The number of awards, however, is accurate and is the government's data. Remember, we are talking about awards per million doses administered.
Dollar value of awards per dose administered
Remember, the number of doses administered is underestimated.
Don't be buffaloed by anti-vaccination lies and spin.
(note: these tables may give the impression that vaccine-injury awards are disbursed in the year of the injury. This is an incorrect impression. From the statistics page of the National Vaccine Injury Compensation Program:
Generally, petitions/claims are not adjudicated in the same fiscal year as filed. On average, it takes 2-3 years to adjudicate a petition/claim after it is filed.
"Compensated" are claims that have been paid as a result of a settlement between parties or a decision made by the U.S. Court of Federal Claims (Court). The number of awards is the number of petitioner awards paid, including the attorneys' fees/costs payments, if made during a fiscal year. However, petitioners' awards and attorneys' fees/costs are not necessarily paid in the same fiscal year as when the petitions/claims are determined compensable.
Due to the populations receiving vaccines added to the VICP in recent years, the proportion of adults to children seeking compensation has changed. Since influenza vaccines (vaccines administered to large numbers of adults each year) were added to the VICP in 2005, many adult claims related to that vaccine have been filed.
My main volunteer activity this year was working on The Thinking Person's Guide to Autism, the blog and the book.
We published 189 posts from 114 authors, many new to Thinking Person's Guide to Autism. The complete list is below the fold.
We branched out. I started to categorize the blog posts using the section headings from the book, and realized a lot of the posts didn't exactly fit. We published a lot more posts by autistics, and more on adult issues in autism. Advocacy wasn't a heading in the book, but was a big subject this year, and into the future. Technology and research were also covered with more posts than in previous years.
In 2011, our Facebook page (www.facebook.com/thinkingpersonsguidetoautism) developed a lively community of its own. We use it not just to publicize posts here, also but to put up short articles and links of interest to the community.
There were two big events here: One was the Self-Advocate/Parent Dialogues, which began on September 19 and ran until September 30. About these conversations, TPGA editor, self-advocate, and autism parent Carol Greenburg wrote:
The thing about conflict resolution is that it requires conflict, which is messy, no matter how sensitively it's handled. Just because it's inevitable doesn't mean it's not annoying. In fact, in my experience, speaking as an individual unable to fully represent any community of any kind, the more annoying the task, the more important it is.
This has been, and will continue to be, an imperfect process. It will continue to be hard work. It will also require a lot of tolerance for the mess and the imperfection, and eyes on the larger prizes of dialogue and constructive conversations.
What is in store for 2012? Running more wonderful posts from you, our community, and more autism advocacy.
On behalf of the entire Thinking Person's Guide to Autism editorial team, I want to express our deep thanks and gratitude for our readers and contributors.
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