Susan Boyle's Autism
by A.G. Moore 12/12/2013
Susan Boyle, the Scottish mezzo soprano whose meteoric rise to fame began with a performance on Britain’s Got Talent, announced this week that she has Asperger's Syndrome. Asperger's, named after a German pediatrician, is a form of high function autism that was much in the news last year when the APA decided to drop it from their diagnostic manual . People who last year might have been diagnosed with Asperger's, will henceforth be given the diagnosis of autism spectrum disorder. Many in the autism community believe that including Asperger's in a broader diagnostic framework is not in the best interest of patients. A consideration of Ms. Boyle's experience illustrates why they hold this view.
In an interview, Ms. Boyle described her reaction to learning she had Asperger's Syndrome: "Now I have a clearer understanding of what's wrong and I feel relieved and a bit more relaxed about myself." This new understanding of self is something many adults achieve when they discover their personalities fit into a pattern that has been identified and described by medical science. People with Asperger's Syndrome may often be distinguished by noticeable but not dramatically divergent behaviors. Among these behaviors--and essential for a diagnosis of Asperger's--is a noticeable deficit in social skills. This deficit, if not addressed early in life, may marginalize a child. This early marginalization often becomes a lifetime sentence.
In most cases, it's the marginalization, and not the mildly autistic behaviors,that have the most devastating effect on an individual.
Ms. Boyle's description of her life provides a telling example of how this plays out. She explains that her learning difficulties during childhood were attributed to brain damage. Learning "difficulties" in someone with Asperger's often are not an indication of diminished ability but of style. This seems to have been the case with Ms. Boyle, who was recently informed that rather than having intellectual deficits she in fact has an above average IQ.
Ms. Boyle describes being bullied as a youngster. Her awkward affect and poor school performance earned her the nick name "Simple Susie". This characterization she took to heart and accepted as a true assessment of who she was. Ms. Boyle left school with poor skills and little that prepared her for full integration into the community. After a brief attempt at employment, she led a quiet, almost reclusive existence. Throughout the years, until her discovery on Britain's Got Talent, singing was the one passion that drew her out of the house. She had an extraordinary talent. As is often the case with Asperger's, Ms. Boyle dedicated herself to this activity with single-minded purpose.
Ms. Boyle was fortunate in many ways. Not only was she born with rare talent, but she was protected by a family that provided her with a stable, secure home throughout her life. Many who are marginalized by Asperger's do not have this kind of luck.
Since her discovery on national television, Ms. Boyle has become a multimillionaire. She has been coached to comport herself in ways that are more compatible with society's expectations. This is not a Cinderella story. It's a story about how appropriate intervention can mold an individual to be a productive, integrated member of society. One tragedy in Ms. Boyle's Asperger's saga is that relief came so late. A greater tragedy is what this saga teaches us about individuals who have not been discovered by Britain’s Got Talent. These individuals have the potential to lead full lives--if only proper diagnosis and treatment were given them.
Ms. Boyle describes her life before discovery as one of self doubt and repeated episodes of depression. Depression is not a symptom of Asperger's; it's a result of being bullied and marginalized (http://www.pediatricsdigest.mobi/content/118/1/130.full). It wasn't Asperger's that restricted Ms. Boyle's life, it was the way her Asperger's was perceived and handled.
In an interview, Ms. Boyle speaks about how having a diagnosis and appropriate treatment has changed not only her self image, but the way she expects others to perceive her. "People will have a greater understanding of who I am and why I do the things I do," she explained.
Asperger's Syndrome, at least the mild form evidenced by Ms. Boyle, is manageable if diagnosed early. Children with Asperger's can learn to accept themselves and learn to accommodate their environments. These children often have special skills that have little chance for full expression in a setting that does not nurture them. A lack of growth is not merely a loss to the child; it is a loss to society. Everyone benefits when children develop the potential with which nature has endowed them.
Is Kim Jong-un crazy, as many in Western media are inclined to suggest? Maybe he is--crazy like a fox. With Dennis Rodman, and other as yet undisclosed former NBA players, heading to North Korea, observers scratch their heads at Kim Jong-un's behavior. The diminuative despot from a small country would be dismissed if it were not for the fact that he presents a grave danger to his neighbors, and to others far beyond North Korea's borders. So nobody treats casually the tiny tyrant who has access to nuclear weapons. The strength of his nuclear leverage is something Kim Jong-un understands all too well.
In light of this geopolitical reality, getting nukes out of North Korea is not going to happen any time soon. Using traditional diplomatic tools to "reason" with the Korean dictator is pointless. Easing sanctions, opening communications--none of it is persuasive to Kim. Each of these approaches assumes that Kim cares what happens to his people, that somehow his fortunes rest on the well being of the body politic. Experience shows this is not the case.
North Korea is isolated. Its people have been conditioned to revere their leader (see a description of Juche and its emphasis on the importance of the Supreme Leader at The Political Philosophy of Juche, from Stanford University). Defectors from the country, who would likely be critical of the regime--confirm that Kim enjoys support from his people. And the Supreme Leader is not likely to feel pangs of conscience. He was born into his position of authority and rules with a sense of innate privilege. Like any hereditary autocrat, Kim believes that his personal well-being is paramount .
Jung executed his former girlfriend, purged his uncle from government and executed the uncle's associates (see Henry VIII, Josef Stalin, Mao Tse-tung--and many, many others for examples). The North Korean people starve as their Leader spurns overtures from the West.
While many describe the Korean dictator's policies as irrational, what these people really mean is that they can't control the ruler. And that's scary. All the measures taken to seduce North Korea, and possibly tame the Lilliputian bully, meet with failure. This is not a reflection of Kim's mental incapacity; it's a reflection of his survival instinct. Without nuclear weapons, without isolation and iron control, Kim's government will eventually fall.
I guess it's fun to characterize the North Korean regime as "mad" and its leader as irrational. We tend to joke about things that make us nervous. But Kim Jong-un is no laughing matter. And if we allow political analysts to set us at ease by persuading us that a fool rules the north end of the Korean Peninsula, then we're the fools. Kim Jong-un is a significant threat and he is deadly serious about insuring his own survival. Nothin' crazy about that.
Leave My Beagle Alone
By A. G. Moore 10/31/2013
I love beagles. It seems research laboratories love beagles, too. The fondness that laboratories have for beagles came to my attention a few days ago when I read of a beagle rescue operation in Brazil. A few days after that I came across a picture of beagles suffering the effects of experimentation in yet another laboratory. While no reasonable person argues that inflicting pain on animals is a good thing, many people argue that it is necessary. This last argument--based on the belief that animal experimentation supports advances in human medicine--has little basis in fact. In recent years, objective analysis of animal models in research has increasingly shown that these experiments contribute little to human welfare and indeed, may actually delay important breakthroughs in medical research.
For example, in 2006 the US FDA issued a statement about the use of animals in laboratories (FDA Issues Advice to Make Earliest Stages Of Clinical Drug Development More Efficient ): "Currently", the FDA declared, "nine out of ten experimental drugs fail in clinical studies because we cannot accurately predict how they will behave in people based on laboratory and animal studies". In 2007, Andrew Knight of Animal Consultants International, carried out a review of the SCOPUS database, which is a reference tool in public and academic libraries all over the world.
Mr. Knight's analysis of research findings echoed the conclusion of the FDA in its dismissal of animal experimentation utility. In his summary, Mr. Knight explains that there is little predictive relationship between results obtained from studies on animals and their application in human models. In Mr. Knight's words: "The poor human clinical and toxicological utility of most animal models .... in conjunction with their generally substantial animal welfare and economic costs, justify a ban on animal experiments..."
The FDA and the Knight report are part of a growing chorus of criticism that surrounds continued experimentation on animals. Though some of the criticism is motivated by concern for animal welfare, most of it merely reflects an interest in efficacy. The fact that use of animal models tends to slow the introduction of new medicines and procedures in the marketplace is put forward in the FDA report cited above. The report states: "The recommendations announced today will help more researchers conduct earlier, more-informed studies of promising treatments so patients have more rapid access to safer and more effective drugs".
Another analysis debunking the theory that animal experimentation is predictive of human outcome was put forward by Steven M. Paul, Executive Vice President of Science and Technology and President of Lilly Research Laboratories. Paul was the lead author of an article that described the poor predictive relationship between animal models and human outcomes. Paul's company, Lilly, tests on animals, so his assessment of this kind of experimentation is likely to be a clear-eyed viewed of its efficacy. Paul states that Phase I and Phase II human trials often fail because these trials are based on animal models. Paul states: "The higher failure rates in these areas are in part due to the relatively unprecedented nature of the drug targets and the lack of animal models with strong capacity to predict human efficacy".
If it is true that animal models are not effective--may even be obstructive--in advancing human research, then why the huge animal research industry? And huge it is. Although I have not been able to come up with accurate figures on the dollar value of this industry, various sources place that value in the billions. The financial importance of this industry to specific interests is reflected in the lobbying activities of industry representatives. According to opensecrets.org, pharmaceutical and health products organizations (PhRMA), for example, lobbied in the U.S. to the tune of $172,297,754 in 2013. In 2012, the same organizations' lobbying efforts were valued at $236,400,389. In the mission statement published on its website, PhRMA admits that its members use animals in clinical trials. The statement partly reads:"..scientists conduct laboratory and animal studies to determine whether a compound is suitable for human testing".
While there seems to be a disconnect between the dawning reality that animal models do not advance human welfare and animal testing, the industry presses on with its archaic methodology. Not only does it press on, but it presses the rest of us, through large PR campaigns, to go along with its program. The influence of the bio tech industry and those ancillary interests that support animal experimentation (such as breeders and habitat providers) was evident to an almost absurd degree when the Helms Amendment was added to the Animal Welfare Act. In this amendment, the research industry pushed through a provision which defined several warm-blooded species as not animal. Since these species were not animals laboratories did not have to observe provisions of the AWA in caring for and handling them.
I love beagles, and all kinds of animals, but even if I didn't I think I would have a moral obligation to prevent suffering whenever possible. Most of us wouldn't pull the wings off flies. And yet many of us don't protest when this same kind of activity is carried on in research labs. We don't speak up because we're told the abuse is necessary in order to discover new medicines that will advance human welfare. But what if that isn't true? What if science can show that animal experimentation is not only ineffective but counterproductive?
What then of the fly, and of us, who stand by while this creature is tortured for no good reason at all?