A recent post on Gestalt made me think about eye contact in autism:
In an evolutionary sense, the eyes hold a considerable amount of information. They are vital communicative tools and have the potential to produce a great amount of anxiety in the gaze-receiver. In many mammals, direct gaze can be an aggressive gesture, including in humans (although with the intricate subtleties of our nonverbal language, direct gaze can mean far more than just aggression). And even in some of the least social animals, they are still cognitively capable of identifying the eyes of an unrelated species. Ever noticed how your pets are capable of knowing precisely where and what your eyes are? They know when you're watching them and when you're not. And when you think about it, that's an incredibly complex neural template to be generated. It means that, for the most part, any unfamiliar animal you-- or your pet-- come across, you have a schema for "eyes" despite that you've never seen that creature before. In predator/prey species which usually involve hunting, chase, and capture, the eyes are vital to survival. The predator needs to know when the prey isn't looking at it, so that it can better take the animal unaware. The prey also needs to know when the predator is looking at it, when it is likely to charge, where the predator's attention is, etc. In social species, the eyes are even more important, providing an additional tool for communication and cementing social bonds.
So, eyes for many animals are fraught with potential anxiety. This is true for humans (notice how in some cultures, eye contact tends to be avoided more often with strangers than with familiars). Therefore, it should also be true for autistics. And since we autistics tend to take anxiety to an extreme, it makes some sense that we might take anxiety produced by eye contact to a greater extreme than our nonautistic counterparts.
Even within the autistic spectrum there is a spectrum of eye-anxiety. Some autistics have such extreme anxiety provoked by eye-to-eye contact that they avoid looking at the face altogether. Others have anxiety to a lesser extent and may be able to look somewhere on the face or make briefer glances at the eyes. Others may have overcompensated for lack of eye contact and take their correction to the extreme and make too much eye contact. And still others, I'm sure, have fairly average amounts of eye contact. Like I said, we're a spectrum where eye-anxiety may be more likely but is not a prerequisite for diagnosis.
For those individuals (myself included) who are capable of making general "face contact" but still find the eyes a bit too overwhelming or distracting, "mouth contact" may be an alternate gaze point. In my experience, humans are extremely sensitive to variations in horizontal (side-to-side) gaze but not in vertical (up-and-down) gaze. So if one were to look at the mouth rather than the eyes, which are in direct vertical line with one another, then most people can't tell that true eye contact isn't being made. Only until the vertical gaze variation is more extreme can someone tell; for instance, if I'm talking with someone and they're just a few inches from my face.
Autistics do seem, on average, to exhibit more "mouth contact" than nonautistics, as shown by eye-tracking technology. One study by Ami Klin et al. (2002) reported:
"Consistent with our predictions, individuals with autism focused 2 times more on the mouth region, 2 times less on the eye region, 2 times more on the body region, and 2 times more on the object region relative to age- and verbal IQ-matched controls. Effect size was greatest for fixation on the eye region, making it the best predictor of group membership. [...]
"We next explored the association between fixation time measures and measures of social competence. Contrary to our expectation, fixation time on the eye region was not associated with either social adaptation (VABS-E socialization scores) or social disability (ADOS social scores) [...] In contrast, fixation times on the mouth region and on the object region were strong predictors of social competence, albeit in different directions. Fixation time on the mouth region was associated with greater social adaptation (ie, more socially able) and lower autistic social impairment (ie, less socially disabled). Going in the opposite direction, fixation time on the object region was associated with lower social adaptation and greater autistic social impairment" (pp. 812-813).
One possibility is that those autistics who showed little "mouth contact" simply found the eye region too overwhelming altogether and were therefore reduced to looking more at objects, while those who looked at the mouths had less eye anxiety and so were able to focus in on the mouth more. The level of eye anxiety could be directly related to severity of the autistic phenotype: the more extreme the expression of autism, the more severe the anxiety provoked by eye contact. And also usually the more severe the expression, the less socially able an autistic is.
There's a lot of information in the eyes. It's hard to tell just how much a lack of eye contact detracts from social fluidity. Surely it plays some role, although how large is hard to tell. I.e., how much is lack of eye contact a direct cause of social difficulties and how much of it is simply correlated to the level of phenotypic severity?
In any case, having been on these online forums since 2004, it's obvious to me that many autistics have a difficult time with anxiety produced by eye contact, so much that we frequently avoid it to varying degrees. And, interestingly, the neural substrates that underlie this tendency are probably not new to autism, but can be found throughout primate evolution and resonate as far back as the early predator-prey terrestrial hunting relationships.
I don't usually refer to myself as "a writer" but I suppose in the loose confines of this blog I can make the presumption. Because if I'm not "a writer" then I couldn't possibly have had "writer's block" these past several months and this blog post has ended before it's even begun. (I'm sure there's some fallacy enmeshed in there somewhere, I just haven't the strength to fight the witlessness of writer's block and my own mid-morning witlessness, so I'll leave that digression into Logic and Debate for a later date. If I have the time. And wit.)
Despite that it's far too late to make a long story short, yes, that was my introduction into what's been happening to me since February: writer's block. I suppose if I had been utterly determined, I could've sat down and forced myself to write something, anything, so my archives of February, March, and April didn't resound with an echoing CLUNK when throwing a rock into a deep empty well...
Oh well.
Here I am, at last. Writing dribble. Some of the most random monologic prose since Dostoevsky's personal journal-- if he had ever written one. Not precisely sure where I'm going, even less sure where this came from. But 100% certain that hardly anyone will read it, and those one or two who do are surely avoiding some inconceivably more mundane task than the reading of this blog requires. In which case, I pity you and hope your procrastination goes as well as mine has these last three months.
...
Perhaps I could liven this post up with a little This Is My Life update. To date, the score stands thus:
1) I've finished off my Bachelor of Arts in Psychology, although that hasn't changed since my last post. Only now, my graduation ceremony is in a week's time. So I will be going back to St. Louis, and getting all dressed up in my cap and gown which I got to pay a ridiculous $65 for-- just so I could receive an all black garb with a weeeeeee line of blue and yellow on the cuffs to indicate my alma mater. The colors are there to ensure that a) I don't forget where I graduated from, and b) that I have to purchase an otherwise all-black cap and gown through the university bookstore, to give my money to the school one last time. I'm sure I'll remember my time there even more fondly for it. So in a week, I'll be walking in my black cap and gown with the color on the cuffs, be given Departmental Honors, and will finally receive my Bachelors certificate.
2) I've finally moved to Louisville and have been here for almost a month. The move went smoothly, although it has been a bit up and down getting used to such huge change. But my partner, JNSQ, has been a godsend and made the transition bearable and frequently enjoyable.
3) Aside from the move, JNSQ and I have been working on "us". Just enjoying spending time together, figuring out a little more day by day where we're going.
4) I'm waiting for my Ph.D. program to begin. It won't start until August, but in the interim I'm hoping to get a volunteer position at the university and work with JNSQ, keeping active in research rather than becoming a couch potato over the summer.
5) In the meantime, I've finished writing a book review of an autism-related biography which will be published in the Journal of Autism and Developmental Disorders, sometime in the future. And I've continued to work on an ongoing project which I started at Washington University involving the ADI-R (Autism Diagnostic Interview- Revised).
Anyways. Cette est ma vie maintenant. C'est tout.
Most of my time though has been filled with two things: 1) my newfound relationship, and 2) research for a paper I hope to begin writing in the near future. As with most types of human relations, the relationship is enjoyably fascinating, yet confusing. The research I'm doing-- while it deals with complicated topics such as encephalization, sexual selection, and the evolution of complex social hierachies-- is far easier to comprehend (and predict) than a single human relationship. And so, much of my time has been dedicated to pondering the complexities of human relations, both on a universal level and a personal one.
You know, it's an interesting hybridization of thought when one splices together awareness of evolutionary theory about reproduction and one's personal life. To look at your partner and simultaneously think, "I'm in love with you, I'd even die for you!" and have that followed up by flashbacks from Dawkins' 1976 book, The Selfish Gene, and whisper to yourself, "...but I'm actually just using you for you DNA." --Takes some of the romance out of the moment I can tell you. And then you have to take a step back, shake away the logic and the realization that you're actually just a selfish creature out there to make as many babies as possible (a fate I logically hope to avoid), and then try to let your amygdalas suck you back into the mood once more.
Is it any wonder we write poetry, make music and art, not just to express this romance but to continue on that high, to keep getting our fix? Ah, yes, I think most of us know it: that brilliant dopaminergic rush of feeling good and wanting to fuck like rabbits. --Or I should say "like humans". I mean, my God, I used to think I had a brain, had a life, loved thought and rationalization and learning and knowledge. But show me a picture of my lovey and I melt like goo in the sultry hand of Cupid. My animalistic DNA has completely taken over and any illusion of self-control over my desires in life is shot clean out the twelfth story window.
And then some small part of my brain steps back, shaking its head, wondering where it all went wrong. "I used to have such incredible discipline... And now look at this pitiful creature. Moaning and moping so much, sometimes she even forgets to eat!" All the while my hypothalamus and amygdalas are giving my left prefrontal cortex the middle finger.
But that's the way it's supposed to be. If I weren't acting like an obsessive lovestruck idiot, why, I doubt my ancestors would've made it this far. They've all acted like complete amorous imbeciles before me-- and should my DNA manage to once again triumph over my inhibitions and I do end up having children, I'm sure they'll act just as ridiculous as I am.
Who knew billions of years ago, when the first amino acids came into being in an oceanic muck of water, carbon dioxide, methane, and ammonia, that several billion years later I'd be sitting here at this computer, obsessively perplexed and fascinated over another DNA-toting "robot"-- my lovey, my soulmate, my je-ne-sais-quoi!-- writing such romantic scientific drivel as this?...
http://www.ageofautism.com/2008/12/a-mes
As a person who is in the beginnings of her research career, I wish to say that though my understanding of Statistics and Research Methodology is not yet at its zenith, even at this early stage in my learning I am familiar enough with data analysis to state very affirmatively that a layperson's view of "science" and that of the scientist, him- or herself, are frequently light years apart. Ideally, the scientist is trained to view data with a skeptical eye, aware of the fact that, while numbers don't ever lie, sheer probability, human error, and interpretation are all too frequent companions to design and analysis. In addition to being skeptical and critical of the results of research, it is also important to note that scientists are trained to never base a conclusion on the results of a single study due to the extreme chance of error inevitably present in all forms of research. In science, theories are based upon the replication of results, not of a single study. Most laypeople do not seem to grasp this concept because we are so used to being bombarded by reports through the media of single studies and anecdotal evidence. A layperson's view of science is one which has been mutated and shaped by the media.
You might ask why it is that scientists are made to be so distrustful of data. Aside from the risk of a poor research design falsifying study results, part of that reason is also found in the statistical analyses frequently used to analyze the data collected in a quantitative study. There are a group of statistical analyses called "Analysis of Variance"; what these do are analyze trends within sets of data to discern the probability of a relationship between these variables. Most scientists don't do these calculations by hand but set up data tables in statistical programs, like SPSS, which do the analyses for the investigator and spit out the results. One of these results which are given with the Analyses of Variance is something called a p-value, which tells the investigator whether the results of the analysis are deemed "significant" or not. A p-value is based upon the "alpha level," which is a value the researcher sets at the beginning of the test; an alpha level is the percentage risk the researcher is willing to take that the results were achieved by chance and chance alone, as opposed to being a result of a true relationship between the variables. So by setting an alpha level of 0.05, you are stating that you are willing to take a 5% risk that your results are due to chance alone. 0.05 tends to be the upper level that most scientists will take, although this tends to vary by the type of research being done. In the Behavioral Sciences, 0.05 alpha is common, while 0.01 (or 1% chance) is seen often in something like the Biological Sciences.
This is one reason-- mathematics-- that scientists distrust the reliability of data. Think of what this is saying: if I set my alpha level at 0.05, I am accepting the fact that I am taking a 5% risk of getting a false positive and that there is really no relationship at all in the variables I'm studying. What the alpha level does is set the amount of variation the sample is allowed to contain in order to calculate whether the relationship is deemed "significant" or not. An alpha level of 0.05 allows for greater variation than does an alpha level of 0.01. By setting my alpha at 5%, I am accepting that, according to probability, if I were to replicate this exact study 20 times, 1 out of these 20 studies would give me false results. --And that's assuming the design in my study is flawless and without human error.
Now you may wonder why in the world I've begun giving a mini-lecture on data analysis when my title implies I'm writing some sort of editorial in response to Katie Wright's post on the Age of Autism blog. I've written the above to illustrate in greater detail the differences between a layperson's grasp of Science and that of the scientist. Not only in this day and age has every Tom, Dick, Harry, and Harriet become armchair psychologists, but they have become armchair scientists as well. There's not too many careers out there where you can be treated as a qualified professional either by attending Harvard OR the University of Google. As someone who has been both on the receiving end of poor health care and someone who is going into the "treating" end of the fields, I have to say how presumptuous it is for every Tom Cruise out there to profess his expertise in interpreting research without the knowledge and training to do so!
By saying that, I am also not implying that every professional out there sincerely knows what they're doing either. Any person who's been on the receiving end of ridiculously ignorant patient care knows full well that a degree hanging on a doctor's wall simply signifies he's gone through medical school. But if I were to read up on car mechanics despite not having the training and experience to work in that field, would you want me fixing YOUR car??? Well, no offense, but I don't want Jenny McCarthy interpreting MY data either.
Perhaps you tell me a car is not the same thing as a child and that parents of autistic children would be offended by such an analogy. Well, I hope you're right, considering if you destroy the engine of my car I can just go and buy a new car. A child, however, is precious and irreplaceable. And it's for this reason that it is vitally important not to leap to any single conclusion concerning the results of research because of the potentially dire effects it might have.
Example: I have a son (I don't actually, this is for the sake of argument). My son has been diagnosed as autistic. I don't know too much about Jenny McCarthy but, through word of mouth, I hear that she's a huge proponent of the gluten-free/casein-free diet and she feels it can cure autism. I'm a cautious parent, but since this isn't anything involving medications and just a change in diet, I figure it's worth the risk to cure my son. Rather than taking my son in to his doctor to run tests on his antibody teeters or to have a tissue sample taken to verify the presence of gluten or casein antibodies (since I'm not a doctor and have little idea what antibodies are other than people seem to mention them when talking about the immune system), I do the if-it-works-then-it's-a-diagnosis method. Unfortunately for my son, his food sensory issues are so extreme that all he will eat are variations of sandwiches. Now that he's gluten-free, however, this portion of nutrition has been removed from his diet. After several weeks of this new diet regime, my son is doing more poorly even though I try to supplement his diet with vitamins. He still has stool problems, his behavior is worse, and, while he was thin before, he's lost even more weight. I finally take him into the doctor, some tests are run, and I am told that, rather than being intolerant of gluten or casein, my son is intolerant to the proteins in milk.
Why did I just give this hypothetical story? Solely to illustrate two things: Generalization and Assumption. Jenny McCarthy made the mistake of generalizing that autism can be cured by a GF/CF diet, without regards to thorough research. And I have made the assumption she's right and have harmed the health of my son in the meantime. Did I do this purposefully? Vindictively? No, not at all. I did what I felt was best for my son. And not being a doctor or a researcher, I wasn't fully aware of the potential dangers inherent in making these assumptions.
Katie Wright is a mother, not a scientist. I can't for one moment imagine her crusade is one of vindictiveness or for lack of caring for her son. In fact, her fervor implies the opposite. As I said though, she is acting as a mother, not a scientist, and she is making the same mistakes that I've illustrated above: she has assumed that aspects of reported research are absolutely true regardless of research design or replication, and she has generalized her assumptions to indicate that all of autism is caused by vaccinations.
I don't know enough about the underbelly of politics going on within the Autism Speaks organization. Frankly, I'm not so sure I'd want to know. And the same thing goes for the CDC, the FDA, and the pharmaceutical companies. I think Katie Wright is right in saying this whole situation isn't just about helping autistic people, their families, and doing the research. It's just as much politics and business as anything else.
What is my take on the whole Vaccine Theory of Autism? I have a fairly precise idea which is neither here nor there. Given the amount of research coming out nowadays on the immune system in autism (and I'm not talking about research put out by the Autism Research Institute, I'm talking about WELL-DESIGNED research), I think it's fairly clear that effects of the immune system are somehow involved in a portion of cases of autism. Now, to what extent, and whether the immune system plays some role in the level of severity, I could only speculate. What role do vaccinations potentially play in severity of autistic expression? Again, unknown. And that is largely because politics (the CDC) has tried to barely touch that with a 40 foot pole, and has solely focused on black-and-white all-or-nothing-at-all research designs: do vaccinations cause autism? Not whether vaccinations might play some role in severity of autistic expression.
To some extent, I can understand the government's and medical community's hesitation in doing the research. Vaccinations have been lifesaving for many people. What do you think would happen if a set of research studies came out with strong evidence that vaccinations increase severity of the autistic phenotype? There'd be mass panic, parents would refuse to get their children inoculated, and certain childhood diseases would likely begin to reappear in force and create larger problems than autism. Already, with the mild panic that's already been induced, some childhood diseases are making a slight comeback.
At the same time, however, the parents groups seem to run wild with anecdote. Like Stalin said, "The death of one man is a tragedy, the death of millions is a statistic." And how right he was. Listen to a single person's hardluck story and we're in tears; hear about the innumerable holocausts in our human history, and it barely turns our attention.
Why do you think, in statistics, GROUPS of participants are used more often rather than relying upon single case studies? Because, while statistics aren't so moving, numbers don't lie-- and the more numbers you have, the more potentially representative it is.
But emotion is infectious: a single person can move us far beyond any number, even if that number is based upon hundreds, or thousands, or even millions. It's because we're human: we're designed to be socially-influenced creatures. We haven't evolved to be natural statisticians.
But the only way for laypeople to interpret the results that are disseminated to the public, without coming to inaccurate conclusions, is in fact by being good skeptical statisticians. Unfortunately, we must constantly caution ourselves that emotion can run away with us, leading us down false paths. It can cause us to hurt the ones we are trying to help.
... Good Lord... where in the world do I start? Well, I suppose my life is the same and yet not the same. I'm just about to finish my bachelors degree (finally! thank Bob, finally, FINALLY!!!!!!!!); I just have one more cumulative final this Tuesday and I shall be rid of the cursed thing forever, take my sheepskin, and move on to graduate school and playing with dead peoples' brains. Of course, my university, being cheap as they are, only has a single graduation ceremony per year-- and that's held in May. So for us December graduates, we just get to wait. --In my case, I get to wait AND come back into town to attend my own graduation.
That's another thing: I'll be moving in a few months. I've just finished sending in my application to graduate school; I've still got one more transcript I've gotta get sent in (hoping to do that tomorrow) and my supervisor should be mailing in my final Letter of Recommendation towards the end of this week. Et finis!
--You may being asking, "But, Emily, does that mean you're planning on moving even without knowing the outcome of your application?" Ah, how keenly perceptive you are. Why yes, yes I am. I think I have an excellent chance of being accepted into this program; however, even if I do not get accepted for this coming term, heaven forbid, I will still move to the area and then enroll in the local community college and spend that year taking more Biology courses (which my Bachelors career had been somewhat lacking unfortunately and was my main weakness as a PhD candidate for this program). And of course I would reapply for Fall, 2010.
After moving, I'll have a few months to spare before the program starts. I may get one of the lab rotations out of the way in the meantime. I am also wanting to work on some computer simulation studies I've been designing (just the meat and bones mind you, I'm no computer science major).
In the meantime while I'm still in town, since I'll be finishing my BA this coming week, I'll continue to work at the WashU lab and will also be starting a collaborative paper with two other researchers in the area of Cognitive Neuroscience and Religious Studies (a strange hybrid of a field that has arisen from viewing Religious Studies topics from a Neuroscience perspective). Ideally, I'm going to be bringing the neurobiology and (I hope) evolutionary theory to the team. I'm looking really forward to working with those two scientists and have been reviewing literature, making notes, jotting down ideas, etc. Now if only I can guide them into FINALLY picking a date and time to meet... ::sigh:: --Like herding cats, folks...
Anyways, that's about it as far as my "professional" (I use the term loosely) endeavors. On the personal side, I have started dating someone, a wonderful guy and I'm extremely happy. It's a very new feeling for me.
K, that's my update. Who knows: maybe some time in the future I may actually have something more than just filler, heh.
So when speaking of autism as a set of advantageous or disadvantageous traits, one must discern how such traits improve or impede the organism’s chances at reproducing. For autism, clearly given the greater difficulty in social bonding, reproductive rates for the entire Spectrum are likely impeded to a certain extent. Therefore, one asks then why autism has not completely disappeared from the human phenotype. It’s a minority, yet appears to be a strong and constant one.
Autism is a continuum of behavior, a continuum which can be seen throughout the entire human race, incorporating obsessive-compulsiveness, cognitive specialization, and general intelligence in its neural repertoire. The existence of this continuum implies a range of phenotypic variation overlain upon a more primitive foundation—a foundation which all humans undoubtedly share: the genetic building blocks of the human cortex.
If autism were due to a set of aberrant genes which the remainder of the species did not share to some extent or combination, I would predict two things: 1) that gene mapping of the Autistic Spectrum would be much further along, and 2) that autism would have been culled from the gene pool long before now. It’s sheer continued existence despite its detriment to reproduction is proof positive that the genetics linked to autism are somehow reproductively beneficial, although they may impede reproduction in those organisms who have more severe expressions.
Therefore, if diagnosed autistic individuals are less likely to reproduce than the general population—so that it is not they who are solely responsible for continuing to disseminate these autism-related genes to future generations-- then the answer must lie in the general population: the “non-autistics”. But then if these genes are so widely distributed through our species, they must provide some benefit to reproduction. A gene with negative effect will soon be culled, a neutral gene cannot be selected for and sheer probability will likely cull it from a given gene pool.
Richard Alexander (1974) stated in the introduction of his seminal paper, The Evolution of Social Behavior, that “because of their peculiarly direct relationship to the forces of selection, behavior and life history phenomena . . . may be among the most predictable of all phenotypic attributes” (p. 325). To put it another way: because behavior is a key factor in attracting or repelling a mate, it is behavior, and not other physical attributes, which is most easily selected for via Sexual Selection. Considering that premise, one asks, what is it about the behavior in the broader phenotype of autism that is a boon to sexual reproduction?
I can’t answer that, except for a few speculations. In his book, The Red Queen, Matt Ridley (1993) states that the defining hallmark of our species, our expansive neocortex, is a metabolically expensive attribute to maintain. He speculates, therefore, that because of its expense, its advantageous link to reproduction must be even more direct. According to Ridley, our big brains are not just for making tools, outwitting predators, hunting prey, and the like; instead, our brains are designed to attract and keep a mate. Because humans are a monogamous yet adulterous species, it is imperative we are adept not only at attracting a mate but keeping him/her present and relatively faithful, reducing the risk of cuckoldry and our chosen mate’s philandery.
It is easy to grind an axe; even birds use tools and can built intricate nests. They don’t need a large neocortex to do so. But socialization requires vast stores of cognitive capability, especially in a social, yet monogamous, yet adulterous species such as ourselves. Therefore, the expansion of the neocortex, particularly the isocortex, has been selected for by Sexual Selection to improve reproductive success, via our abilities to win and keep a mate. All socialization are outcroppings of this goal.
In the case of autism, savant abilities aside, autism-related genes likely reach a peak of reproductive benefit to the human organism when expressed in greater moderation, e.g., the broader phenotype, simply because these genes in more severe phenotypes reduce the likelihood of reproduction. This, however, does not negate the worth of an autistic person simply because he or she may be less likely to reproduce. Because humans are an intelligent social species, our intelligence has made life more than just about sex, despite that sex is our mode of genetic replication. Therefore, it is not necessary for someone to be a savant just so that his or her worth as a human being can be appreciated.
However, utilizing the paradigm of evolutionary theory, lower rates of reproduction will most likely keep the Autistic Spectrum, as it is currently defined, as a minority. And yet the unidentified yet obvious benefit that lesser phenotypes of these same genes impart implies a substantial benefit to human reproductive success. Therefore, in studying the makeup of autism, in observing savant abilities, and traits such as the deficits in language and socialization, we may instead be studying the extreme form of the human cortical continuum.
Somehow, Sexual Selection has selected for autism. It is a wiser question to begin to wonder: WHY?
References:
Alexander, R.D. (1974). The evolution of social behavior. Annual Review in Ecology and Systematics, 5, p. 325.
Ridley, M. (1993). The Red Queen: Sex and the Evolution of Human Nature. Harper Perennial.
**This essay was first posted on the forums at the AWARES Conference 2008.
For me, it's ultimately the order of the cosmos or what I describe as creation. You can't simply have, in my own judgment, creation simply being a random event because it is so inherently ordered, and the fact that the natural environment is being ordered where it can properly coexist over time. If you were simply reducing that to mathematically [sic] probabilities I've got to say it probably wouldn't have happened. So I think there is an intelligent mind at work.
According to Dawkins' The God Delusion (2008), Rudd has proffered a classic example of the Teleological Argument: the universe appears ordered, therefore somebody must have ordered it. There is also a bit of Occam's Razor intertwined in this hypothesis because, while the universe does appear to follow a predictable set of laws (physics, chemistry, biology), it is one of the simpler solutions to propose that an overarching deity has designed it that way-- as opposed to proposing that, say, Porky the Pig's evil twin sneezed one day and thus the universe and all its laws were created.
It may come as a shock to most people except those who are statisticians or neuroscientists, but humans tend to be poor predictors of probability. Both the Clustering Illusion and the Representativeness Heuristic hit on this point. The Clustering Illusion states that humans tend to see clusters of "relevance" in random data or information; this point is well illustrated in an experiment performed by Thomas Gilovich (1991). In this experiment, Gilovich showed participants a random binary code, OXXXOXXXOXXOOOXOOXXOO, and asked them whether they thought the string of symbols appeared random or nonrandom. Unsurprisingly, most people felt that the data looked nonrandom, when in fact the binary presents with several characteristics of statistical randomness, most notably there are equal occurrences of both binaries and the combination of adjacent results also occur equally. (In true probability, when there are two possible outcomes, each outcome is just as likely to occur and the previous outcome does not effect any succeeding outcomes.) The Representativeness Heuristic similarly states that objects or situations which are alike in appearance or other characteristics are often assumed to be related. In addition to these theories, there are human tendencies such as pareidolia, the tendency to attribute significance to insignificant stimuli, especially images or sounds, and apophenia, the tendency to see patterns in random data, such as faces in clouds or woodgrain. These also illustrate the fact that humans tend to under-predict the probable and over-predict the less probable with certain types of data or in certain situations.
Why are these theories about human nature relevant? As Dawkins (2008) would say, while our judgment of probability is less than accurate, it has certainly served a purpose in human relations and in our ability to adapt to our environment. It is far more beneficial to assume animation in inanimacy than vice versa, because animate organisms have always posed a far greater threat to us than inanimate objects. Therefore, those organisms who were not only capable of recognizing living from nonliving creatures but also saw "life" where there was none were less likely to become food for stealthy predators than those organisms who did not perform likewise. It is a similar concept to Pascal's Wager: given probability, you are far wiser to assume there is an overarching deity than not because there are many benefits if you are correct and few consequences if you are wrong. In an evolutionary sense, you are covering your bases if you over-assume animacy because you are more likely to outlive those who do not, even if some of the consequences happen to be worshiping trees and seeing your dead Aunt Margarette's face in a passing cloud.
Having stated all this, I won't go into whether I feel P.M. Kevin Rudd's belief in God is false, since not only would that take up more print but it would also be a waste of valuable time given that the bedrock of scientific analysis, both quantitative and qualitative, is falsifiability and I've yet to meet the individual who's capable of proving or disproving any incorporeal body. However, whether Rudd is ultimately correct in his conclusions or not, his argument is a false one. If I am asked to add 2 + 2 and my answer is 4 however I calculated that answer not by counting up 1 + 1 + 1 + 1 but instead dividing 100 by 25, then my method is inherently flawed despite that my answer is correct. (And, reader, please note with my little mathematical analogy that I have just utilized the representativeness heuristic to my favor in an attempt to convince you, despite that Arithmetic is in no way the same thing as Theology!) But regardless of Rudd's belief in God, his proposal, that the occurrence of life without the design and guidance of a Designer as improbable, is a fallacy regardless of its accuracy. A fallacy which, as Dawkins (2008) would say, is just one characteristic outcome of genetic inheritance. And according to Dawkins, who are the designers of this fallacy? Natural and Sexual Selections.
References:
Dawkins, R. (2008). The God Delusion. Boston: A Houghton Mifflin Co.
Gilovich, T. (1991). How We Know What Isn't So: The Fallibility of Human Reason in Everyday Life. New York: The Free Press, p. 16.
Sydney Morning Harold, The. (2008). Cosmos order proves God exists: Rudd. Retrieved on 09/28/2008 from http://news.smh.com.au/national/cos
We all know that it's the electorate that actually elects the President of the United States, which is undemocratic enough. However, in a strange twist of even-more-un-democracy, if your electorate votes before you get to then your vote actually means even less than it did even before!
So, other than dismantling the Electoral College, what's the next best step you ask??? Simple:
VOTE ASAP BY ABSENTEE BALLOT
and make sure that your representatives in the Electoral College know who you want for President.
Go Vote Absentee
And get the word out so more people know to vote absentee!
Here is the project statement:
Whether scientist or practitioner, it is impossible to understand the brain without knowing the person. And for conditions such as the autistic spectrum, there is so much variety that it is impossible to identify any one behavioral trait which defines us all. There is no one thing we do, no one thought we have, that makes us "autistic".
It was with this in mind that this project was begun: to bring together adult autistics and mental health professionals who are involved in studying, helping, and treating autistic people, so that we might learn from each other.
Many autistics have noticed there is a derth of personal understanding of the autistic conditions, and that even the "experts" sometimes don't know who they're dealing with. Some know us better via fMRI's or postmortem studies than through interaction.
So this subforum has been set up to foster that personal interaction, to indirectly improve research in the field of autism and to improve treatment methods that affect our quality of life.
Enjoy the project.
So, if you're autistic and would like to get involved, or are a researcher or treatment professional, come, join, read, and post.
I'll be beginning my final semester in undergrad this Monday. Given the somewhat last minute change in PhD program I will be applying to, I have intelligently/stupidly altered my final semester schedule to include some last minute science courses (lemme hear a HURRAH for last-minute last-ditch efforts). Consequently, this will be the heaviest and busiest semester I've ever had in undergrad. I am somewhat looking forward to the classes-- not absolutely thrilled mind you, but (aside from working my ass off) I'm sure I'll enjoy them and learn quite a bit, particularly from the chemistry class I'll be taking.
Over the summer, I continued to work at my research practicum. That's going well and I hope to continue there into the late winter, up until the point I move to grad school.
I have also become re-obsessed with Frida Kahlo (I always had an interest in her but my interest has hit an all-time flare-up). I've been reading a biography about her by Hayden Herrera, an author I was already familiar with, having owned her book on Frida's paintings for a decade now. I also, and a little unwisely, had a bit of a buying frenzy on Amazon and purchased Frida's Fiestas, a book about Frida which also includes many of her own recipes (one of the authors is Diego Rivera's daughter), Frida by Frida, a translated collection of many of her own personal writings, and My Art, My Life by Diego Rivera. As mentioned, prior to that I already had Frida Kahlo: The Paintings by Hayden Herrera, and I also already had Frida's published art journal. So, vive la Frida!
I've also become re-interested in chess, and have purchased (also a bit unwisely) a few books on that. One book is a 1st edition on the history of chess pieces, and the other is Chess Fundamentals, a translated and updated edition of said book by the great José Raúl Capablanca. My mother told me that my great grandfather, at some time long ago, was the National Chess Champion of Denmark as well as the champion of St. Louis. However, while I have an extreme interest in chess, I can only conclude that his talent has become rather muddied through the generations because I don't see any considerable talent in myself. --Ah well, c'est la vie. So I am determined to be a buff of chess history if nothing more. I think if I learn enough tediously detailed factoids, I can simply bore my opponent into resigning, lol.
And, after, oh, a good year and a half, I have finished the art project I started in an independent study. I know my professor will be extremely happy and I've promised him a copy. It was originally going to be an installation of drawings. Since then, it has morphed from separate drawings, into a combined work in Photoshop, so that it is now a single 4ft x 5ft piece and is all ready to print. --Once I get the money to print it that is, as printing large pieces on acid-free paper in full color can tend to be rather expensive.
On top of my revived artistic streak, I have revived my poetry writing as well. I am currently focusing on a particular topic for a series. So far I think it's going well. I plan on bringing in what I've done of the series to my old poetry professor on campus and ask him to look them over. A bit of background: though I am now going into research, I was originally a Creative Writing Major, and when I decided to switch majors due to burn-out, he said if I ever had anything I wanted read I could bring it to him. So, since this is my final semester at this university, I shall take him up on his offer. It'll be nice talking to him anyways and getting back in touch. He was always an interesting guy to talk to: very eccentric, but very cool also-- and if there was anything you ever wanted to know about UFO's, just ask him! Also I do respect him as a poet, even though I don't honestly prefer his own work; but he's INCREDIBLY well read, knows his history of both poetry and literature, and is a well-published poet, so it's not as if he's not in touch with the "Professional Poetry World"-- something I personally try to stay as far away from as possible.
Anywho, c'est tout.
"Savage . . . was responding to media coverage of the [California] Report I had sent to numerous media outlets that reported on the Report."So it seems as though Savage had earlier mentioned said Report on his show, though as yet I have been unable to find mention of it on the internet (but then that was before Savage's untoward comments of July 16th). So... Savage was the first to mention the Report, Rollens sent more info to him on the Report following this mention, Savage went off on the Report even more, Rollens sent the email requesting people to call-in as well as sending an email to Savage himself, Savage stews for about a month and a half, then finally blows up with his July 16th comments. Chaos ensues, titty boom.
I don't know... I've lost count of the number of reports having reportedly been reported about this Report.
***eyes going crossed***
Statement by Autism Speaks Regarding Radio Host Michael Savage's Remarks About Autism
One important goal of increasing awareness about autism is to foster a greater level of acceptance and understanding of the very real and significant challenges it poses to individuals with the disorder and their families. The good news is that we see more and more expressions of this compassion every day and everywhere, from classrooms and plagrounds to ballparks and supermarkets. Unfortunately, there are those who are apparently incapable of feeling compassion. They deserve our pity, not our scorn.
For the record, I don't disagree with Autism Speaks' official statement. Having now both listened to and read some of Michael Savage's philosophies on life, I can only imagine the childhood he had which would produce such a man. I do pity him; and for all his bravado and masculine verbal posturing, I can't imagine he's a particularly happy man.
However, whatever pity I may feel for him personally does not change the fact that his behavior was entirely inappropriate. It doesn't change the fact that his words have the potential for harm, and since he is in the public eye and therefore an authority figure, it is the responsibility of the people, of his sponsors, of the network, and of all relevant organizations-- such as Autism Speaks-- to try to put a stop to this abuse.
The fact that I pity such a sad and pathetic man does not give him carte blanche to continue his abusive tirades and to be allowed a national forum in which to do so. Therefore, while I appreciate the statement Autism Speaks has posted, I hope that this statement is not the only action they plan on taking.
Pity, while less obtrusive than hate, is just as harmful if it places one in a state of complete inactivity.
On Wednesday, July 16th, Michael Alan Weiner-- better known on his various shows as "Michael Savage"-- made comments during his radio talk show on Talk Radio Network,The Savage Hour, which have outraged advocates for autism. Here is the brief transcript of his comments:
"Now, you want me to tell you my opinion on autism, since I'm not talking about autism? A fraud, a racket. For a long while, we were hearing that every minority child had asthma. Why did they sudden-- why was there an asthma epidemic amongst minority children? Because I'll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], 'When the nurse looks at you, you go [fake cough], "I don't know, the dust got me"'. See, everyone had asthma from the minority community. That was number one.
Now, the illness du jour is autism. You know what autism is? I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is.
What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot.'
Autism-- everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, 'Don't behave like a fool.' The worst thing he said-- 'Don't behave like a fool. Don't be anybody's dummy. Don't sound like an idiot. Don't act like a girl. Don't cry.' That's what I was raised with. That's what you should raise your children with. Stop with the sensitivity training. You're turning your son into a girl, and you're turning your nation into a nation of losers and beaten men. That's why we have the politicians we have."
And now, not only have Michael Savage and TRN refused to retract the statement, but according to the Autistic Self Advocacy Network (ASAN) he has gone even further and said that "the autism spectrum is an overdiagnosed medical condition" and is "unsupported by science of any kind".
And what is more amazing, these comments fall fast on the heels no less of MSNBC having fired Savage for defamatory comments he made earlier on his July 5th television show to a homosexual caller. Here is the brief transcript according to USA Today online:
Savage: So you're one of those sodomists. Are you a sodomite?
Caller: Yes I am.
Savage: Oh, you're one of the sodomites. You should only get AIDS and die, you pig. How's that? Why don't you see if you can sue me, you pig. You got nothing better than to put me down, you piece of garbage. You have noting to do today, go eat a sausage and choke on it.
The Lesbian, Gay, Bisexual, and Transgendered community has been battling Savage for some time, since as I understand it this minority group is a continual punching bag of his. This community had attempted to warn MSNBC that putting Michael Savage on air was a grave mistake; one I'm sure they now regret in hindsight.
According to Jeremy Gaines, spokesperson for MSNBC, "His comments were extremely inappropriate and the decision was an easy one." His television show has lasted only a little more than four months.
However, this isn't the first occasion that Savage has given his opinion on autism-- there was an earlier occurrence just this last May in fact. On the blog Onibasu.com, the author reposts a forwarded email from Rick Rollens, a parent activist and father of an autistic child:
"Well, it seems that national talk show host Michael Savage, who describes himself as a 'compassionate conservative' and host of the nationally syndicated Michael Savage Show, has taken on the autism community. He stated in a program yesterday that the new California Report was 'a way to drum up business' now that the Iraq war is over and that there is no proof that autism is increasing. He also mocked our community by reading a list of some of the symptoms of autism and said 'I have that, I have that, I have that' mocking the seriousness of the autistic condition."
Rollens goes on, asking people to join him in calling their local radio affiliates and getting on the air with Savage. Rollens himself emailed Savage as well:
"Hey Michael: I understand you recently spoke about the autism epidemic on your show. I also understand you used my name on your show. Since I was the person who sent you the information on the State of California Department of Developmental Services Autism Report, I would appreciate it if you would allow me to educate you about this terrible condition that my son and thousands of others like him suffer with everyday of his life. I would also invite you to spend a day with my family here in Sacramento to see what life with autism is all about.
I hope you will allow me a chance to educate you and your audience about autism and the autism epidemic, if, for no other reason then to explain the costs to taxpayers now and in the future if we dont find the causes and develop effective treatments and a cure for this horrible disorder."
Now, I'm not exactly certain why Mr. Rollens thought it was a good idea to send said report to Michael Savage; surely there are other media personalities with a better more compassionate grasp on reality. But it's possible (though unconfirmed) that Mr. Rollens, having brought the "autism epidemic" to Savage's attention, has triggered Savage's more recent tirade. Your guess is as good as mine. But prior to May, so far I can find no mention on the internet of Savage having broached the subject of autism before. (If anyone has any more detailed information of this topic, please contact me and I'll gladly write an update and/or correction. I will also attempt to email Mr. Rollens for clarification on this matter.)
However, for a little background information on Rick Rollens: he calls himself an autism advocate, he supports the hypothesis that vaccinations trigger autism (or at least have done so for his son), and he was instrumental in founding both Families for Early Autism Treatment (FEAT) and the University of California, Davis M.I.N.D. Institute. He also has a 23-year long career working in the California State Legislature. And as far as autism is concerned, he says that his advocacy and research are for those with the full syndrome of autism (i.e., no HFAs or Aspergers included).
Currently, organizations like the Autistic Self Advocacy Network (ASAN) are now working hard, fighting to get Savage's comments retracted and (hopefully) get him fired for having proffered them in the first place. --The irony that autistic-adult-run advocacy groups (HFAs, Aspergers) and other disability organizations are now spear-heading the battle against Savage's latest comment is an irony in contrast to Rollen's "full syndrome" stance which will be discussed later on in detail I'm sure. For now, Savage.
Under the guise of "entertainment", many outrageous claims go unanswered. Under the mistaken guise of Free Speech, Savage clings to his rickety soap box proclaiming his cruelty and ignorance a God-given right. For one, entertainment is entertainment; it's supposed to be fun, it's supposed to while away the time and lighten the load: it is NOT supposed to potentially harm people. And while it's impossible to prevent all unforeseeable harm (life is life and mistakes happen), it is not acceptable to knowingly injure any given person or group of people. Short of being declared legally incompetent, Savage knows exactly what are the ramifications of his claims. As does the Talk Radio Network. And as do his sponsors. Doing willful harm to any given person or group of people does NOT fall under 1st Amendment Rights, any more than it falls under my rights to make human sacrifices for religious reasons. Free Speech is not a cover-all blanket which, provided you assault someone's ears rather than their body, it is perfectly lawful.
Savage calls himself a "compassionate conservative" according to his critiques (SavageStupidity.com, Savage Lies, StopHateRadio.org), and while I am a newbie when it comes to the savagery of Michael Savage, I can't honestly imagine a single compassionate word having ever left his lips-- especially on air. So I am fascinated from what dictionary Mr. Savage has pulled this definition. In any case, whatever poison-filled words continue to spill from his lips, I can only hope soon that it won't be coming from any television or radio that I am privy to.
Therefore, if you wish to show your support in not only advocating for a compassionate view of the Autism Spectrum, but also wish to just help stop the hate, please follow the link below and sign the petition, urging TRN's sponsors to pull the rug out from under Michael Savage.
http://www.ipetitions.com/petition/Disab
In addition, if you wish to go one step further, here towards the bottom of the page you will also find a letter template for writing or emailing TRN sponsors; their contact information is also provided. According to ASAN, Aflac and Telesouth Communication have already taken an active step and pulled their ads in response to Savage's comments. I applaud these companies, either for their compassion and/or for their good business sense-- as Mr. Savage is undoubtedly a public relations nightmare.
And for any overly-determined and passionate individuals, it is recommended that you boycott all TRN sponsors (minus those who have pulled their support of course) until this matter is satisfactorily resolved.
Well, much has changed. And as I've aged, I've matured-- and immatured-- a little more each year. In high school, like most teenagers my amygdalas ran wild with my logic and I largely did whatever I felt like doing and to hell with the consequences. This included holding a grudge against a high school chemistry teacher to the point I almost failed her class out of my own stubbornness; and this eventually came to me barely having graduated high school despite having started out on the honor roll.
Through a slew of wrong diagnoses, wrong meds-- and heavy ones at that-- I was very lost for several years ranging from my mid-teens to early 20s. It was a horrible time, and I was very disordered, whatever label you wish to stick to that.
Since I self-diagnosed and later on was professionally diagnosed, my life has changed so much that I almost no longer recognize myself. While I was always an introspective individual, knowing that I am autistic has given me an incredible framework in which to understand myself and expand that understanding. In a short time I've gone from a person who was rather lost and wandering to someone who knows EXACTLY what she wants to do with her life, where she's going, and what she needs to do to get there.
Life is good right now. Very good. And while I know I am autistic, there is always the questioning, the doubt. I am doing so well that even I would concede that whatever my personality is like, I do not feel disordered, I don't feel impaired because of my autistic traits because I have learned so well and so quickly to work WITH them rather than against them. I am a naturally anxious person; however, rather than embracing this nervousness, instead I use methods to stop anxiety right when it begins before it gets set in. I don't allow myself to give energy to unpleasant repetitive thoughts. And I don't allow me to beat myself up for mistakes I've made. I am autistic, but I feel very psychologically healthy. --Healthier than most people I meet. I am tired of this idea of "disorder" versus "normal". I am autistic, but at least presently it doesn't cause me impairment. At least not so that I can't deal with it on my own.
But I have to concede that, aside from any intrinsic qualities I have, half of this non-disorder of mine is sheer luck. Lucky that my life is going well, lucky that I have some financial stability, lucky that I have a support system (despite that I'd like to broaden it more), lucky that I am enjoying life.
And this could change in an instant. In my life, I am walking like on the edge of a knife-- doing well while I can remain balanced. But if the ground should shake a bit, I won't find it so easy to stay on.
We all walk on the edges of knives, I realize this-- autistic and not. But perhaps for autistic people, those who are doing well, the blade is a little thinner, our balance a little poorer, and the fall just a little farther...
In youth life was much simpler. Complexity was as familiar as the deepest reaches of space; so ignorantly happy that happiness was never even a thought. But life changes unknowingly, like fearsome tides, like slow growth, like unswerving unalterable death. And our eyes widen to take in a little more breadth of the dark space that surrounds every world. And we grow up a little more with every view, until in the end it's so wide that we must shut our eyes to the Great Panorama for fear it may swallow us into some inexorable permanence of awareness-- like we know and have already seen what it is.
--Closing our eyes for the last time, our hair grayed against the black universe and white-flecked stars-- death the other inevitable, the finale of ultimate awareness, when our eyes roll back just a little too far and breach the dark space behind.
While I am part of the online autistic community which heavily supports the concept of Neurodiversity and this is where my passion lies, I realize that other autistics-- I don't know how many-- really do want a cure. I won't quibble over numbers, trying to contrast group size as a support to say that the majority's will is the only right answer-- whether that's to cure or not to cure. But when it comes down to it, even if there are only a handful of individuals in either of these two groups, it isn't right for any one person to speak for another's needs. It isn't right for a pro-cure autie to speak for an anti-cure autie and vice versa. And while we may argue endlessly over who's got the best intentions, who speaks for the majority, it doesn't change the fact that when it comes to a cure, autistics opinions are as variable as any other opinion or trait we may possess. After all as the saying goes:
When you've met one autistic, you've only met one autistic.
From a pro-neurodiveristy perspective (I don't prefer to call myself "anti-cure"), I can say that for myself the reasons why I support this movement are as follows:
1. The movement has helped to create a sense of pride for many people who have otherwise gone through life hating and blaming themselves.
2. It promotes awareness of strengths in autism-- the "positive side" you might call it. It promotes the idea that, while as autistics we may have certain deficits, we have strengths as well. Some may use this as a reason to say if the world got rid of autism, these lost talents and perspectives would be a loss to society; I don't disagree with this, but from a more human perspective this isn't the reason we should be valued as worthwhile human beings. We should be valued as worthwhile human beings because we ARE worthwhile human beings, like any other. However, our talents can help us battle against those deficits we do have. It is for this reason that I do not think of myself as "disordered" because I have been endowed with both deficits and abilities particular to autism; clinically, this does not fit the mold of a "pathology".
3. The pro-neurodiversity movement has helped to create a common goal, it has helped to create unity within online and offline autistics who share its philosophies.
From a pro-cure perspective, while I don't agree with it, there are certainly those autistics who want a cure, both for themselves and for future generations, and consider the Autistic Spectrum a group of pathologies. (Although I sometimes wonder whether a desire for a cure isn't actually another form of self-hate, in which case some CB therapy might actually be better.) I can't profess to empathically understand this perspective because I am so passionate in my support for Neurodiversity. However, despite that I support Neurodiversity, I know that I have no right to speak for autistics who do want to support research for a cure.
Were a cure-pill made tomorrow, thankfully it would be up to me whether I took it or not. It would also be up to those who are pro-cure. They would probably take it; I would not.
As someone who supports Neurodiversity, it is wrong for me to try to deny another person treatment they would want to have. On the flip side, it is also wrong for them to tell me I should be cured.
However, as research is going, a treatment for the cure of autistic spectrum conditions is not going to be available to adults. Instead, such a treatment is more likely to only work during gestation (or at the latest, very early childhood). Therefore, the concept of "cure" is up to the parents.
It is wrong for pro-Neurodiversity advocates to speak for unborn children, to assume that these children as adults would not want to be cured. It is wrong for pro-cure advocates to speak for unborn children, to assume that these children as adults would want to have been cured. It is wrong for parents to speak for their unborn children, to assume that their children as adults would have wanted either to have been cured or not.
If at all possible, I advocate for such a decision to be made by the individual him-/herself. But in this case, if a cure is ever available, the opportunity will long predate adulthood.
Therefore, with all three groups arguing against each other over who has the greatest right to speak for a foetus, when in actuality nobody does, we have reached an impass, a question to which there is no simple answer.
In reality, because parents are responsible for their children, such decisions will undoubtedly fall at their feet and not to either the pro-Neurodiversity or pro-cure groups. I can only hope parents start listening to both these groups and weigh very carefully before acting, with the awareness that their child, in either outcome, could regret their decision.
Despite that I never like feeling foolish, despite that while I've tried to learn to take criticism well I can't pretend it doesn't wreck me, I don't think this experience was a mistake. Granted, myself and others made mistakes, especially earlier on. We assumed, based on Zazzle's word, that Autism Speaks had attempted to thwart neurodiversity free speech. In this instance, I cannot deny, we were thoroughly and utterly wrong.
But wasn't this just another opportunity for us, as a fledgling advocacy movement, to try our wings and spread them a little further?
As a movement, we are not only young in years but our membership tends to be younger as well. Young-to-middle-aged adults who are not especially experienced in advocacy and legal matters. As such, untrained, flying by the seat of our pants so to speak, it is inevitable that we make more mistakes than other older organizations and movements. Not to mention, as autistics, because socializing and cooperating are usually not our forte, it can make it all the more difficult to attempt to create a sense of solidarity amongst a group of such diverse (and sometimes stubborn) people.
What we have achieved so far, however, is immense, even if it is not keenly felt by the public and the media. Before the internet, there was no "autistic community" to speak of. Just since the 90's has an entire community been formed. In addition, while the gay rights and deaf rights groups certainly have had much to contend with and fight against, unlike us they didn't have organizations (such as Autism Speaks) who fought both FOR and AGAINST them. Therefore, while they were oppressed, they knew they were oppressed and didn't have to fight from WITHIN their ranks to be able to acquire the rights they deserved.
As verbal autistics, we are used by organizations like Autism Speaks to bolster the impression of the 1/150 "epidemic" in order to bring in more money. They dangle our numbers in front of the cameras, for the commercials, for the walks, for the senators and congressmen, and then quickly shove us back in the closet before we protest. At the very same time, somehow we're both included and excluded --go figure that one out; a little GW logic should do the trick. Therefore, when it comes down to it, we're being used without our permission: a violation in its basest sense. And this from an organization who, given their purpose, should know better.
So, my original point: Was this a mistake? Should we regret its occurrence? Should we wish that this whole Autism Speaks t-shirt incident never happened???
Answer: The best lesson learned is not from our successes but from our mistakes.
Manager: Well we have received letters in the past from um ah Autism Speaks in regards to products with trademark violations so when our um content management staff came across this product they believed this shirt was in the um past correspondence with Autism Speaks but uh they did not specifically call on this product, this was a decision by an employee from content management.
Zach: So this was just a decision by your staff?
Manager: Uh yes, because we thought it was in past correspondence with some past products that were brought to our attention.
So as you can see from the snippet of phone conversation, Autism Speaks did in fact have nothing to do with this incident and it was instead Zazzle staff who made the decision to remove said product. --An employee who perhaps was trying to help Zazzle avoid further problems with Autism Speaks since they had been contacted prior, an employee who clearly needs to familiarize him-/herself both with their own Zazzle User Agreement AND United States Copyright Law.
However, now is not the time for us to slink back with our tails between our legs, because change is definitely needed. We were wrong. But that doesn't change the fact that Autism Speaks' goals and philosophies do not address-- and in many cases even contradict-- the very community they profess to speak for. As Zach states in his blog:
I hope this event can be turned into a positive one in which Autism Speaks works side by side with Autistic People when lobbying lawmakers, and raising awareness. I recognize that Autism Speaks has good intentions, but they should also realize that there intentions do not match with the needs of Autistic People.
Well said, Zach.
On The Phone With Zazzle from Zach Lassiter on Vimeo.
"On the Phone with Zazzle"
Runtime: 04:39
Posted June 25th, 2008
CS Rep: [Name] speaking, how may I help you?
Zach: Uh yes, um I've been trying to get a hold of you guys regarding a copyright violation?
CS Rep: Uh huh.
Zach: Uh, my name's Zachary Lassiter, um, um, but my uh, I had a shirt taken down by Autism Speaks?
CS Rep: Okay?
Zach: Um, I was wondering if you could verify that you were contacted by Autism Speaks to take that shirt down?
CS Rep: Uh, if uh, if someone had sent you an, uh, an email that why you, uh, that that says something to the effect of Autism Speaks had requested that be taken down, then yes, they have.
Zach: Could you verify that that actually happened in this case? I'm actually the owner, I need to verify this stuff, because I'm actually--
CS Rep: Unfortunately as I'm a, a, a customer service agent I don't have that information for you.
Zach: Do you know how I can get a hold of people that do?
CS Rep: Uh yes, you can reply to the email that was sent to you--
Zach: I have been replying to that but I have not received a response back and I would like to discuss this with the people over the phone.
CS Rep: What's, what's your uh, what's your email address?
Zach: Zach at the zach dot net.
CS Rep: Uh, Z-A-K?
Zach: Z-A-C-H.
CS Rep: C-H?
Zach: Yes. Z-A-C-H at T-H-E-Z-A-C-H dot net. You people were supposed to call me back yesterday and they never did... regarding this... [long pause] You still there?
CS Rep: Yes I am.
Zach: Okay.
CS Rep: Do you have, uh, proof of ownership of copyright?
Zach: I don't need proof of ownership. All I can say is Autism Speaks, yes, it's a trademark but it's also covered under Fair Use in parody laws in the United States.
[long pause]
Zach: ... Which makes it allowable for me to legally have that shirt manufactured without violating copyright.
CS Rep: Uh, hold on a second.
[No dialogue from 02:21-03:35]
CS Rep: Zach what's your last name?
Zach: Lassiter. L-A-S-S-I-T-E-R.
CS Rep: Okay, here's what I can do. Unfortunately I can't do, uh um, much at this time because the Manager of Content Management is not in right now--
Zach: Okay.
CS Rep: --and he would be the one that would need to contact you.
Zach. Alright.
CS Rep: Uh... so let me leave him a message--
Zach: Alright, can you just at least verify for me that Autism Speaks contacted you regarding this?
CS Rep: Once again, as I am a customer service agent, I am not privy to those records.
Zach: Okay.
CS Rep: So, uh, in any case I will allow you the chance to talk to him directly once uh, once he gets this message.
Zach: Alright I tried-- he was supposed to calm me yesterday, he never did. Is he supposed to be in today?
CS Rep: Uh, I believe so.
Zach: Alright thank you.
CS Rep: Bye-bye.
Zach: Bye.
Since I last posted, Jonathan Mitchell of autism's gadfly had mentioned that he'd contacted a woman, Dana Marnay, in the Communications Department at the Autism Speaks organization, asking for their side of the story. According to Jonathan, Ms. Marnay responded that Autism Speaks had not instigated the matter, that Zazzle had in fact made the decision to remove the t-shirt for violation of their User Agreement, and that Autism Speaks essentially had nothing to do with it.
Therefore, the problem arises of he-said-she-said, since all current evidence is hearsay, each coming from Zach, Zazzle, and Jonathan Mitchell. Considering this and the possibility that, according to Jonathan, Autism Speaks is denying any involvement, it is imperative that Zach receives a hardcopy of the original correspondence from Autism Speaks to Zazzle (assuming such a document exists).
I personally contacted Zazzle and spoke with a representative, asking about company policy regarding legal matters. The representative informed me that in the case of legal threats, such as this, all documentation is kept on file and that Zach should be able to request a copy of the original correspondence from Autism Speaks to Zazzle. Zach is currently attempting to contact Zazzle and has already spoken to a customer service representative and is now waiting for someone from management who has more information than the CS rep to call back. The CS rep was unable to give any more detailed information other than what was provided in the original emails; he did, however, repeat that if Zach was informed via email by Zazzle that Autism Speaks had requested the shirt be removed from the website, then that is what happened. The rep, however, had no more specific information to give him. Thankfully, as you can hear in the above link, Zach has recorded that entire conversation, also pointing out to a very nervous representative that his use of the trademark is protected as Fair Use under US Copyright law.
I also attempted to contact Ms. Marnay at Autism Speaks to get their side of the story (to find out whether Autism Speaks is officially denying any involvement), but as yet she has not returned my phone call. (I should mention that when I left my message I said only my name, that I wanted to ask her a few questions, and gave my phone number. In no way did I mention the topic of my questions, so her failure to return my phone call is undoubtedly due to some factor other than anything deliberate.) Hopefully I will hear back from her either this week or early next.
In the meantime, Zach should be hearing back from Zazzle management and find out whether he will be able to receive a copy of the original correspondence. If he receives it, Zach hasn't intimated what his next move will be (at least not that I'm aware). Hopefully it will involve contacting Autism Speaks and then contacting the media and letting things snowball from there.
In the meantime-- though I don't know how especially wise it was for him to do this-- Zach has designed a new t-shirt utilizing Zazzle once again:
I have purchased my shirt to show my support. Who knows how long this one will stay up...
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