Okay, so I'm kind of stealing this post from my Case Study on Gestalt. I may consider suing myself at some point for copyright violation. But for now, I'll simply push blindly and brazenly ahead in spite of any of my protests.

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.

http://www.ageofautism.com/2008/12/a-message-to-au.html#more

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.

Come to think of it, I've never posted anything on LJ about the Case Studies Project. Case Studies is a subforum which has been set up on Gestalt; it was designed to foster learning between the professional and autistic groups. Each volunteering forum member sets up his/her own Case Study thread. In it, the initial post gives some background information about the individual. Each following post to the thread tends to focus on a particular topic related to autism and that person's own experiences; sort of like an "autistic journal". Each person's thread is unique and personal. Research and treatment professionals are welcome to come and read, ask questions, and just generally interact with the posting members.

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 have since briefly talked with Rick Rollens. He had this to say:

"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.

It doesn't come as a surprise to anyone who has been living on planet Earth since the time humans could walk upright on two feet that Ignorance has always been alive and well, feeding off the gullible and even more ignorant as it winds its way from ear to ear. So why should any new amazing feats of outstanding ignorance be worthy of mention? Well, that's an excellent question, one I haven't got an answer to. But since this latest bout of cruel stupidity involves autism, it's mention has made its way onto my blog.

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/DisabilityCommunitySavage/index.html

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.

I wasn't diagnosed with Asperger's Syndrome until I was 25; I hadn't even heard the term prior to age 22; and "autistics" were just people who couldn't talk and I didn't know much about.

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...

I was lying in bed last night, unable to sleep, thinking about all of this Autism Speaks commotion and I realized that, when the topic concerns a "cure," there really is no fair and just answer to all this.

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.

Some who are against the Neurodiversity Movement would say that the entire t-shirt fiasco was a faux-pas, an embarrassment for us perhaps and something we should regret.

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.

As I promised Jon Mitchell, I am currently posting a retraction of the earlier t-shirt saga. Zach has finally heard back from a manager at Zazzle's Content Management. According to the transcript of the conversation, the representative had this to say:

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.

I've transcribed the phone conversation between the customer service representative and Zach, for anyone who wants to read it rather than listen. (For the life of me I just couldn't understand what the CS rep's name was, so I've just put [Name].)


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.

As a disclaimer, I should say first off that this is an update from my perspective only; because I can't possibly be everywhere at once, have my finger on the pulse of every thread, or be taken into the confidence of every person or group involved in this situation, my information is limited. Nevertheless, from my POV I'll try to give a quick rundown of events:

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...

As Jonathan Mitchell in autism's gadfly recently wrote:

I decided that in all fairness that I should contact autism speaks and find out what their version of the event was. I talked to a woman in their communications department named Dana Marnay. She stated that Zazzle felt that Zach was violating their terms of service policy for some reason and that autism speaks had nothing to do with this THEY IN NO WAY SHAPE OR FORM CONTACTED ZAZZLE PERIOD! The decision to pull zach's t-shirt ads they said was entirely Zazzle's autism speaks had nothing to do with it whatsoever.

I don't know whether Zach is lying about this or not and I don't know if the letter zazzle sent to him was a fabrication or not. Assuming this letter is not an out and out fabrication on Zach's part, then maybe the representative of zazzle was lying when he told this young man that they were contacted by autism speaks.

If one can believe Jonathan and his blog post, The Zach T-shirt saga: Autism speaks' side of the story, -- which I do-- and Autism Speaks is now officially denying their involvement if they did indeed instigate legal threats, then as the old stereotyped-Indian saying goes:

"Autism Speaks with forked tongue".

However, I for one find it strange that Jonathan reports Ms. Marnay as saying "Zazzle felt that Zach was violating their terms of service policy" when, according to her, Autism Speaks hadn't even contacted Zazzle in the first place. So how did she know what Zazzle "felt"? Did Zazzle decide to contact Autism Speaks about the shirt, a shirt which didn't violate either their own User Agreement OR copyright law? Or did the two organizations get together for a nice coffee and a chat after this story hit the internet blogs to discuss their "feelings"? --I'm not saying it's impossible; but I will say that it's strange for Autism Speaks and Zazzle to be so suddenly chummy if Autism Speaks had nothing to do with this in the first place. Their exchange of communication has occurred too rapidly for me to not grow suspicious of Ms. Marnay's reporting (or I should say "Jonathan Mitchell's reporting of Ms. Marnay's reporting") of events.

What's the point?

In his post, Jonathan makes an important point: despite that Autism Speaks' behavior is not unexpected for those who have lived through the earlier NT Speaks legal saga, we have no hard proof that Autism Speaks did indeed "request" Zach's shirt be removed from the site; we have only Zach's and Zazzle's words.

I should personally state that, despite an unpleasant run-in I recently had with Zach on Wrong Planet forum on this subject, I do believe him. But as a skeptic, as a researcher, I want proof, I need proof. And I think proof is definitely warranted in so serious a case as this-- especially if all this is true and Autism Speaks refuses to acknowledge the threats that their organization may have made.

Despite Jonathan Mitchell's willingness to, in turn, take Autism Speaks' word at face value, he makes some excellent points for which I can only be grateful of this devil's advocate. I therefore responded:

...[T]hank you for pointing out some flaws in all this that others (including myself) have missed: 1) we assumed that Zach's reproduction of the Zazzle emails were true, and 2) we assumed Zazzle was being utterly forthright in its reporting.

I do suspect, given probability, given the format of the reproduced emails, given Autism Speaks' past behaviors regarding threat of legal action online, that all of this can be taken at face value.

However, your critique . . . has brought to our attention that Zach needs to contact Zazzle and get a hardcopy of the original letter/email from Autism Speaks to Zazzle so that, if Autism Speaks did indeed instigate this entire mess (as they claim not to have), they are not able to cover their tracks. . . .

Unfortunately, other than taking a whole bunch of peoples' words, we have no hard proof that:

1) Autism Speaks instigated these legal threats against Zazzle and Zach;

2) that Autism Speaks is now officially denying any such actions.

Therefore, to get something at least in email format, I have written Autism Speaks asking, as a "concerned parent", for any information they can give me in this matter. You may ask why I chose to lie and pose as a parent: for the simple reason that, had I identified myself as who I am, an autistic adult, I suspect I would never receive a response. Which is a sad statement in itself.

I also hope that Zachary decides (hopefully in the very near future) to attempt to contact Zazzle and request a copy of the email or letter they originally received from Autism Speaks. --If it hasn't been deleted or destroyed by now that is. This way, if and when Autism Speaks attempts to deny their actions, there is available evidence to refute such statements.

If Zachary's report is true, if Autism Speaks did threaten legal action against Zazzle and Zach and if they are now attempting to cover that up, then they need to be held accountable. Such behavior may be "morally" acceptable in the world of big business, but behavior like this from a charity organization is inexcusable.

Ah yes, our beloved Walmart of the 501c's, our ultimate conglomerate of charity organizations, Autism Speaks, is at it again. You may recall me writing back in January (however few of you who may read this blog) that Autism Speaks threatened to bring charges against a teenage autistic girl for parodying their website:

Kelly, a 14 year-old autistic girl and member of Aspies for Freedom (an autistic rights activist group), felt strongly enough about [neurodiversity] that she started a website to illustrate some of these human rights issues. It parodied the main page of the Autism Speaks  website, implying that while the organization claims to speak for autistics, it's better at ignoring them instead. She called her website, 'NT Speaks'.

The organization threatened to sue Kelly not only for copyright infringement but for donations lost due to this faux-site and one-millionth of supporter decline; all of this, they felt, totaled approximately $90,000. --However, once Autism Speaks found out she was both autistic and a minor, they quickly dropped the threats and in return demanded her site be taken down. She complied.

I'm no lawyer, but at that time I thought (and I still do) that Autism Speaks did have a legal right to threaten a lawsuit since the site seemed to step beyond the accepted bounds of "parody". I was, however, irate about Autism Speaks' reprehensible behavior throughout the entire situation, using big-business scare tactics to achieve their ends.

Now, given all their money and all their power, Autism Speaks can undoubtedly afford some very expensive lawyers. However, given their past and now more recent actions, I can only conclude they must have some very bored lawyers, because all they seem to do is wander around the internet looking for people to threaten.

--And they've done it again. However, this time, legally, it doesn't seem as though they've got a leg to stand on. --Of course, not to in any way do I mean to imply that this stops them from actually getting their way. All they have to do is talk loud and carry a big stick. And with the amount of money that organization takes in they can afford a very big stick indeed.

Anyways, the latest story:

Zachary Lassiter, an autistic man, designed a t-shirt using an online website, Zazzle.com. The t-shirt was meant to illustrate his frustration with the vast and powerful Autism Speaks organization-- a frustration which many, who know better, certainly share.

The shirt read:


In a June 18th blog post, however, Zach informed his readers that he had been notified by Zazzle that the design would be removed for "violation of Zazzle's Copyright policies". Technically, "Autism Speaks" is a trademark, not a copyright because it is not considered a "creative work".

Under point 3c of Zazzle's own User Agreement, it states that:

In using this Site, you agree to not . . .  upload, download, post, email or otherwise transmit any Content that may infringe any patent, trademark, trade secret, copyright or other intellectual or proprietary right of any part. By uploading or downloading any Content, you represent and warrant that you have the lawful right to reproduce and distribute such Content and that the Content complies with all applicable federal, state and local laws, regulations and ordinances" (Retrieved 06/22/08).

Zach's use of Autism Speaks' name, a trademark, however is indeed protected under the Fair Use doctrine under United States copyright law and therefore not an infringement of copyright law and therefore not an infringement of Zazzle's User Agreement.

Zazzle.com does however reserve the right to remove any content for any reason they see fit regardless of compliance to the User Agreement:

Upon placing your order, you acknowledge that Zazzle may review your order, and the Content it contains, for adherence to our guidelines and compliance with the terms and conditions set forth in this User Agreement. Without limiting the foregoing, Zazzle and its designees shall have the right to remove any Content that violates the Agreement or is otherwise objectionable to Zazzle. (Retrieved 06/22/08).

Following this notice from Zazzle, Zach responded, inquiring as to whether Autism Speaks had requested the removal or it had been of Zazzle's own accord. He was informed thus:

Thank you for your interest in Zazzle.com, and thank you for publishing products on Zazzle. Unfortunately, we have been contacted by Autism Speaks Inc. and it was requested that these products be removed from Zazzle.com. At the risk of legal action taken against Zazzle and yourself as a contributor of these products, it was decided that it was in the best interest of both parties to have the products removed from the Zazzle Marketplace.

So it seems that, in order to prevent further headaches, Zazzle complied with Autism Speaks "request". Given Autism Speaks' history concerning legal threats, I would imagine "request" is probably polite code for "they said they'd sue us if we didn't comply".

Yes, the Autism Speaks' lawyers are just a little too bored methinks, having nothing better to do than surf the internet all day, drumming up potential lawsuits.

--Personally, I don't half-blame Zazzle; when a huge monster of an organization like Autism Speaks threatens you with a big stick, you run the other way as fast as possible! Had I been the owner of that business, I would have done the same thing.

So what's the big deal???

Freedom of Speech is a very big deal. The internet is one of the last havens for free speech-- one of the ONLY havens for adult autistic people, and our voice gets quashed even here. As autistics, we've dealt with bullies in school, in the workplace, but never before have we been so forcefully silence by the very people, Autism Speaks, who claim to be our voice-- who claim to want to help us.

They want autism cured, eradicated. They pour money into organizations, into research, into lobbying. And provided we, as autistics, simply smile, nod our heads, and say "thank you", we are touted as success stories. But when we disagree, when we speak and say things that contradict the very goals and philosophies Autism Speaks is founded upon, we are threatened and we are silenced. Our vast numbers are included in this 1 in 150 epidemic, but when we call ourselves "autistic" they tell us we're not autistic enough to have the right to speak out and advocate for ourselves and for others.

I'm sure most, if not all, of the people who will read this blog already know and agree with everything I've said. Preaching to the choir, I'm sure. But for anyone reading this to whom this darker side of Autism Speaks is new and as yet unfamiliar, I ask you to please think hard the next time you consider donating, please think of what you're actually walking for and supporting, please think of the associations and the bedfellows you choose to keep. Because there are far better ways to help autistic people than by supporting an organization which so actively discriminates against them.

Somehow, due to our anthropocentrism and long-lived assumption that we humans, while mortal, are entirely separate from the rest of the organisms living on this planet, we've developed a bit of a god complex: sometimes we think we're gods. Thankfully, Darwin and his proponents have helped to point us in a slightly more realistic direction, but even for the most staunch Evolutionists there is still a lingering notion of separateness from the rest of the world. We look down from our mountain, try to remind ourselves that the mountain is a part of the earth and intricately involved with the valleys below; however, being the only ones living on this metaphoric mountain, it's hard to remember that we are more alike than different from our lowly valley-dwellers. Therefore, on occasion we must take the time to exercise our viewpoints and remind ourselves of our relatedness, no matter how much we might secretly disbelieve it.

But despite our relatedness, there are some things which separate us as a species from all other species. It's relative of course, but the gap is wide enough to generalize at least two things:

1) Our incredible ability to design and build technology has helped us forge ahead in the animal arms race. We have not only our cerebral cortices to thank for this feat but also our bipedalism and dexterous hands. Unfortunately, our incredible cortex with its ability to design and plan has not always blessed us with the foresight as to whether such technologies should be built or how we should inhibit their use. (Nobody said Evolution strives for perfection, or if they did they were sorely mistaken.)

2) Aside from our ability to focus our energies outward onto the mechanical world, we are also adept (some more than others) at self-reflection. And it is this which has been both a boon and a bother to us.

I have heard many autistics-- including myself-- complain about the nonsense of human social rituals. There is a certain fakeness to these ritualistic dances, and while some individuals might enjoy the dance for its own sake, others realize it can often be a very complicated means to an end. Upon self-reflection, its possible to see how silly it all is. But does that make social rituals obsolete now that we have the capacity for greater self-reflection? I don't necessarily think so.

And these same dances can been seen in nature; therefore, it's not just the higher cortex that complicates ritualistic behavior, it's genetic tradition. So, perhaps the problem is not necessarily the ritual itself, but our awareness of the ritual and its potential for waste. For instance, a bird doesn't sit on a tree limb after he's finished warbling his mating song and stop to think:

What am I doing? This is all just so ridiculous! Why don't I just fly up to her and ask, 'Hey, do you want to mate this season?' But nooooo, I've gotta put on this incredibly complicated show, have to start building a nest-- a better nest than any other bird, I've gotta do that funny little dance too, just so she'll even CONSIDER having me!

It isn't the dance, it's the awareness that you're even dancing at all. When other organisms perform their social rituals, they don't realize it, they probably don't have the capabilities to realize it (at least for their sakes I hope not). They just do it. Whatever it takes to survive and procreate.

So for humans-- and autistics especially-- maybe the problem comes not with all the little intricate social dances we might take part in, but the realization that it's only a dance, it's only a song, and we're just trying to build a bigger and better nest than the next bird.

Dances aren't bad, but sometimes they can be a considerable waste of time and energy. And I think many autistic people become painfully aware of this. Not all social rituals are wasteful, but many over the millenia have become so complicated that they can squander unnecessary energy, while simpler more direct methods might be more effective.

Therefore, for us mountain-dwellers with our bigger cortices and our skills of self-reflection, maybe we should put our brains to good use again. We discovered fire, we built our weapons, we've made computers. Now maybe we can cull away at some of the wasteful social rituals and keep those that really matter. Instead of gossiping behind other peoples' backs or driving around in big cars to flaunt our money, maybe we could focus on spending time with our family and friends more, giving time to help others who need us, smiling at strangers, opening doors for others, putting other people first once in awhile. All these social rituals help to cement human bonds rather than break them down, emphasizing cooperation rather than competition. Such rituals, like helping an old woman off a bus, stopping to help a stranger pick up dropped change, these are certainly not a waste of time.

No matter the myriad forms the expression of genes may take, no matter the tangible intricacies of the human form, it is inevitably an imperfect art when man tries to label what he sees. A label is necessary in order to attempt to define, diagnose, treat, and communicate this process to other human beings. However, when do we begin to lose those tangible models which aid in categorizing and start to get too bogged down in the language we've manufactured to communicate those models?

There is a cause for every effect and vice versa, and Science's most base assumption is that everything follows set rules-- that everything, in all its chaotic appearance, is somehow orderly and therefore potentially testable via the scientific method.

When it comes to language however, we often don't stop to realize that it is a system of symbols, of metaphor, which we use to generalize tangible or theoretical concepts in order to communicate them. Such language is especially necessary in sciences involving treatment such as medicine, psychology, and other health professions in order to communicate these basic treatment models to others.

But despite its necessity, when does language become a barrier to successful research and treatment? Metaphor may seem to make some basic sense but when applied to a tangible situation, it might fall considerably short. But even scientists in some base manner of speaking are poets: even they have a tendency to latch onto larger paradigmatic models that appear metaphorically sound. --Freud, for instance, is a brilliant example: he never tested and confirmed that there was an Unconscious mind; instead he theorized and applied his theory. But why has the concept continued to pervade Western cultures? Perhaps in part it is because most people think it makes some sense. Most people are aware that certain cognitive functions are out of their immediate awareness; what greater metaphor than to call it The Unconscious and to personify it?

Humans are metaphor machines. It is evolutionarily advantageous to see patterns and learn from them so as to predict outcomes. Unfortunately, we're not perfect metaphor machines, as evidenced by our poor abilities to intuitively predict probabilities. But we're still fond of seeing patterns where they may only exist. After all, isn't it safer to overreact than underreact?

However, when it comes to the sciences, metaphor can be a dangerous tool. Language, yes, is necessary in order to communicate our findings to other scientists and treatment professionals. But it is also a land mine of assumptions, of leaping to conclusions without fully testing, and of ignoring issues that have become part of accepted tradition but have never truly been validated.

One such concept I proffer is: Pathology. Everyone knows what illness is, at least they think they know until they try to define it. Even most scientists probably think they know what illness is, spouting off some form of textbook definition. Unfortunately, it is an umbrella concept which has been a part of human culture from an unknown date and because of its age, it is a concept which has not been fully tested due in part to its vast implications: in order to test the concept of illness, wouldn't you need to test forms of all illness? But there is also the fact that, from a metaphoric standpoint, it seems to make some sense. If a person is dying from cancer, most wouldn't hesitate to call that pathological, to say that person is ill, and that cancer is abnormal.

The definition of "pathology" also seems to be fairly vague. --An excellent way, by the way, to say something scientific-sounding but make it unfalsifiable. It is defined both as the study of disease and the disease itself. And the "disease" itself is considered an abnormal functioning which causes some form of impairment. "Abnormal" is anything deviating from the mean, usually more than two standard deviations. "Impairment" is a decreased ability, or an increase in likelihood of morbidity or death. This means that in order to assess impairment, one either has to measure said ability prior to the "impairment" in order for pre- and post-comparisons or to illustrate that the individual seriously deviates from the larger population mean. Considering most diseases are not monitored in a pre-disease state or that some diseases have no pre-disease state, this means that the more feasible comparison is to compare the individual's ability, condition, or state to the population mean. However, how much does said individual have to deviate before they are considered abnormally impaired and therefore have a disease and therefore a pathology? The answer to that question seems to be: nobody really knows for sure. In some subfields, standardized measures of deviation may be agreed upon and strictly utilized. In other subfields, like with behaviorally defined pathologies, this may be left up to the individual treatment professional.

In addition to the dictionary definitions of pathology, disease, abnormality, and impairment, despite that most definitions don't include it, there is the implication that not only is a pathology abnormal and causes impairment, but this abnormality and impairment naturally indicates the necessity for some form of treatment. After all, that is the entire point to studying, identifying, and treating "pathology" isn't it? To improve the human condition?

Herein lies the problem: where is that boundary between abnormality which could benefit from treatment, and abnormality which is just simply that: abnormal? Sometimes, there isn't a clear boundary; sometimes it is a continuous spectrum, varying from person to person, and many times varying within the same person over a period of time. For instance, Homosexuality at one time was considered pathological; however, no longer listed in the DSM, it is now simply considered a "difference". But why? You ask any homosexual person whether they have suffered because of their orientation and I guarantee you most will say yes. You may argue that it isn't a pathology because the impairment wasn't due to the homosexuality but because of the cultural regard for homosexuality. And I agree, the pathology of homosexuality seems to be rooted largely in the culture and not the individual. But aren't other pathologies similar? For instance, autism and Asperger's people are often the brunt of social torture, and because of this sometimes the most debilitating issue for autistic people isn't that they think differently than others and have a different view of the world, but because of the misery they are in from a world that has largely rejected them. If this is often the root of their impairment, the greatest barrier to happiness, then why is autism considered a pathology? Are not many aspects of the pathology of autism solely rooted in the nonpathological expectations of the culture? I'm sure the same could be said for many other conditions, not even neurological differences, but also many medical conditions. If a woman with Polycystic Ovarian Syndrome (PCOS) endures a whole host of other related medical conditions and often has difficulty with fertility, but lighter variants of PCOS have increased fertility rates, where is the pathology? If someone with a small benign tumor on his thigh isn't considered ill but someone with a benign tumor in his pituitary gland is, where is the pathology? If a homosexual man, by having anal intercourse, increases the likelihood of his contracting HIV because anal intercourse increases the risk of infection moreso than vaginal intercourse, where exactly is the pathology?

When it comes down to it, evolution-personified doesn't know what "pathology" is. The expression of genes either increases or decreases the likelihood of disseminating these genes and nothing more. And even with our metaphoric labels it's almost impossible to use them without generalizing far too much, because a word is usually black-or-white all-or-nothing-at-all, while the effects of genetic expression are a symphonic spectrum, a grayscale with innumerable frequencies and combinations.

Therefore, I pose the question: is the concept of Pathology a necessary communicative tool, or are we getting too lost in metaphor and forgetting to look at the tangibility right before our eyes?

For those unfamiliar with the Autism Research Institute (ARI), despite its reputable-sounding name, its research seems anything but. I consider myself an autism advocate: I advocate for myself and I would like to advocate for those on the spectrum to live happy fulfilling lives (this does not mean though that they necessarily need to be "normal" in order to do so).Therefore, it comes as little surprise that I consider such an organization as ARI harmful in that it treats autism as a demon personified, trapping small children in lonely worlds; however, also, it professes that autism is a separate entity from the child and therefore worthy of loathing (Defeat Autism Now!). Autism is the perpetrator and the person with autism is the victim. Such an attitude teaches a person that they are broken and diseased. And while it is easier to separate a diseased leg from one's personality, try separating the brain.

ARI instead is better at propagating desperation (usually that of the parents) and spreading false hope. What is wrong with some false hope you ask? Perhaps you should ask those people who fell victim to various televangelists like Peter Popoff
or Jim Bakker.

It comes as a great shock that the Institute's original founder, Bernard Rimland, was a vocal proponent of the Mercury-Autism Hypothesis, particularly given his strong beginnings in turning the tide of autism theory from the Refrigerator Mother to acceptance of autism as a neurobiological developmental condition (see his 1964 book, Infantile Autism: The Syndrome and its Implications for a Neural Theory of Behavior).

Nevertheless, the Institute is not held in particularly high scientific regard, and given its publications (one of which I will critique below) that comes as little surprise.

Critique on the ARI article, Preliminary Results of 3rd DMSA Study by Adams et al.
http://www.autism.com/danwebcast/presentations/anaheim/adams.pdf

I would like to say first off that I do not believe autism is caused by mercury poisoning. However, given newer research on immunology and oxidative stress in autism, I do feel that something is going on, perhaps involving vaccination as one agent of effect. However, given postmortem evidence of brain anatomy in autism, it is clear that the development of autism begins in early utero, far predating vaccinations.

That said, my critique point by point:

Methodology:

1) The paper states that this is a double-blind study, implying that there is a control group. Yet in this article, they report no results on the controls. Therefore, the reader is unable to contrast and compare results between the two groups.

2) There is no mention as to how the participants were recruited and how they were chosen to take part. Medical establishments? Autism Speaks? CAN? Local churches? Where they all given the ADOS and any child who tested in the autism range was included? This is important because, without knowing where the participants came from, there's no way to accurately judge that this was an unbiased sample and an unbiased sample is vital to do the statistical analyses these researchers performed.

3) In this study, the ADOS was given to the participants following treatment 1 and then treatment 2. I have a big problem that the researchers gathered no ADOS scores prior to the children beginning the study, thereby giving no baseline score for comparison.

4) The researchers give no background information on any of the participants. There is no indication as per the ages of the children nor a listing of other medicinal and nonmedicinal treatments these children may or may not be receiving. Various medications do have effects on the body's oxidation. Also, was the control group required to be medication-free? If so, that has the potential for a huge confounding effect. And if any of the experimental kids were receiving behavioral treatments, this went unanswered. Any of these factors could be playing a part: natural development with age, medication, or other treatment plans which are taking place concurrently or prior to the study.

Results:

5) 80 began the study, only 40 finished. Even though this is enough to resemble some sort of statistically normal distribution, 40 is still a very small number for these researchers to recommend glutathione as a treatment for autism.

6) The results of the study were compared to both parent impressions (general interview as well as ATEC) as well as the ADOS. I have two issues with this: a) yes, parents should be asked of their opinions; however, in such a study, more objective measures should be used and biased opinions avoided. The ADOS, I have personally learned, is an adequate tool for diagnosis of Autistic Disorder and PDD-NOS in young children. However, it is a poor tool for differentiating within the spectrum. Therefore, it should not have been used to detect a change in severity, especially when the shifts in severity were so subtle. For measuring such severity, it is an inadequate tool.

7) With the ADOS, I would've liked to know who performed the first and the second ADOS. Were they the same people, potentially introducing bias? Or different people who might score the same child slightly differently? There is no mention as to who performed these tests except that they were "qualified".

8) As for the correlation between excretion levels and ADOS, this to me spoke mountains. The most significant correlation between excretion levels and ADOS scores following the first dose was 0.36. For a little background on correlations, here are the ratings of correlations:

0.0-0.2 = no correlation
0.2-0.4 = low correlation
0.5-0.7 = moderate correlation
0.8-1.0 = high correlation

These occur in both positive and negative ranges, with negative numbers indicating a negative (or inverse) correlation. Most researchers view correlations that aren't moderate or higher with due suspicion that the result was potentially coincident. Following the 9th dose, the highest correlation is 0.35 (another low correlation). Yet these results are espoused as being significant. Therefore, all scores ranged from low correlation to no correlation at all.

9) I take issue with a study that uses a quote to make its conclusions-- a quote nonetheless originated by the leading researcher in this study:

Finding lead or mercury in an autism victim is like finding a bullet in a homicide victim-- further investigation needed for 100% certainty, but in both cases it is highly likely that one caused the other (Adams, 2007).

Why is this a problem? Well, first off, it's clear that Adams has already made up his mind before even performing this study, which makes him a prime candidate for accidental or intentional experimenter bias. He also proposes that finding lead or mercury in autism is the guilty bullet having caused the conditions; and if that is his logic, then every child in their study should've been a "homicide victim" since every person, autistic or not, has mercury and lead in his/her body. On the same note of logic, that would also imply every person is autistic.

10) Before performing further replication studies, the researchers of this study are already recommending longer treatments for those whose lead levels were still "high". I.e., they're recommending a treatment before having tested whether it's sound and relatively risk-free without having studied the effects of longer durations, but at the same time they continue to state that more research is needed before the treatment should be recommended. Double-talk.

11) From a single study, they have concluded there are no adverse side effects on general health.

12) Despite the low correlations, they even bolded their conclusions that higher excretion decreased severity as measured by the ADOS, using techniques like bolding or highlighting to make their point stick despite that it's a weak one. An advertising technique. In science, if the results are significant enough, no amount of bolding or highlighting is ever necessary.

13) Their final conclusions stated, "Glutathione, lead, and mercury are linked to severity in autism, and to improvement due to DMSA." This statement is prematurely false. They proffered no evidence in this study directly linking higher mercury and lead levels to their autism participants. The authors have automatically jumped that extra step and assumed correlation is equivalent to causation (and low correlations at that). For instance, if indeed there are higher levels, it could be very well that autism is the cause of higher levels of mercury and lead, rather than the reverse.

14) Despite that the paper is called the 3rd preliminary study, there is no review of previous results. Did the current results hold true to previous ones? Do they differ? Did the methodology differ? There's no indication.

15) The article gives no indication as to having been published in a peer-reviewed journal. I assume this means it hasn't been published except online by ARI who was funding the research.

I don't mean to say that the only place for publication is in established journals, no. What is important is the peer-reviewed process. And there is no such indication for this article.

My Conclusions:

This was a poor study, with researchers who seem to have made up their minds before performing the research and whose bias, either accidentally or intentionally, affected the design of the study. The methodology was poor, the reporting of said methodology was poor, making replication impossible. This study has been designed to only be replicated by the ARI researchers and therefore impervious to true scientific scrutiny.

Post your autism story here.

My Autism:

Like any life, some days are beautiful, some are miserable, and many are in between. My life consists of thought, of observation, of experience, and some confusion. I set goals, I plan (sometimes), I achieve or I fail. What makes me so different?

But I have felt different my entire life, only to be diagnosed in adulthood. I didn't know why early on, I was just "me" and I still am, only with a label and a better focus on how to interpret myself and the world around me. I consider Autism as my little instruction booklet to myself, a manual that helps sum up my difficulties and my abilities, though by no means defines me.

I am considered "high-functioning" despite that I've come to detest these sorts of labels (they denigrate any difficulties I may have: "successful" does not necessarily equate "easy"). Much of my social life consists of online chats and forums. Occasionally I feel lonely; most times, I'm too distracted by interesting things, such as studying or making art, to have the focus to truly care. I can be friendly, self-confident, funny, and painfully shy. Sometimes I need a change; most times I find comfort in my routine.

My interests are my life. I'm going into research. I'm both analytical and creative, however oxymoronic that may seem. I am a scientist in the art studio: picking apart behavior, designing questionnaires, inputting data-- drawing with colored pencils or fine graphite, painting in acrylic or water color, photographing nature or architecture. Always keeping an eye out for interesting angles and compositions, be they in art or science.

I worry about my future-- not so much my career, but my life as a human being, as a social creature designed to relate to other human beings-- though I'm clearly not designed so well in that respect. I worry about intimacy, about finding another person to share my life with, be they a wonderful friend, partner, or both. I worry about being seen as an equal, as a mature person by other people, yet at the same time I worry about not finding someone to mentor me in the things in life which I just can't seem to learn as naturally or as quickly as others. 

I am happy, but I worry that my happiness rests like on the edge of a knife ready to fall to either side and pitch me into misery. I worry that my happiness is dependent upon life's Predictability, Calmness, and Financial Stability moreso than most people-- each of these which, everyone knows, is rarely predictable and that few people go through life unscathed by this trio's inconsistency. 

I worry about large and small things. And I find enjoyment in large and small things. The large: in thinking one day I'll be successful in my chosen field. The small: such as enjoying a trip to Walgreens and buying some small trinkets that I loved in childhood and have never truly outgrown. --The feel of sun on my face after winter especially that first warm day, watching cartoons, and sadness knowing that one day, drawing nearer, my mother will pass away and my life, an extended childhood, will leave me and I will change forever.

I am autistic, but all these things, these worries and blessings, abilities and difficulties, though particular to me are not unlike those things most people enjoy and worry about. I suppose my point is this: despite that my brain is statistically ab-normal, despite that I have a label, despite that I may even view and experience the world in unusual ways, I am not so different. I am beautiful and ugly, happy and miserable, like any human being. And I am as much a Disorder as anyone else.

If one were to personify Evolution, he would say that Pathology is a ridiculous invention of the human brain: mere semantics in order to categorize when our bodies or minds don't quite work normally or-- in the case of more deadly conditions like cancer-- may be harmful or deadly to the organism.

Therefore, Language becomes an alternate world of its own. But whatever you call something, however you categorize it, doesn't change its inherent nature. Therefore, words like "disorder", "disease", and even "syndrome" have no place in material reality; they are simply shorthand symbols we humans use to categorize the variety that living organisms come in. Sometimes, that is a potentially deadly variety, as mentioned with cancer; sometimes, as is now the argument with autism, it isn't usually deadly but now advocated for as a neurological difference (i.e., Neurodiversity)-- although sadly one may argue its deadliness what with our high suicide rates .

I will not pretend words do not have an effect. Indeed they do, as we humans are dependent on them for communication, society, and having our needs met. Words are a visual and auditory medium for affecting change within ourselves and others. However, they are not real, beyond their sound, their appearance, and the meanings we choose to give to them.

So when someone tells me "Autism is a disorder", I am taken aback, not because I find it insulting (although I do), but that I suddenly realize this person and I have no common ground on which to find agreement, because they are coming from the world of Semantics. As humans, we act as though words are REAL, because they feel so real. A single word can trigger a cascade of imagery in our brains just with a passing mention. In such a Semantic world, words have material substance, therefore it makes sense when doctors label something a "disease" or a "disorder". --How many people would argue that cancer isn't a disease? But it isn't. To Evolution, it is just one more variety that happens to often kill its larger host. Yet cancer in its controlled sense is life (the generation of cells) and as living organisms our cells are constantly dying, dividing, and growing, so how does one truly call it a "disease"? There is no clear line.

And for a parent to hear "Your child has a disorder called Autism", that is a powerful sentence. Does it change the child? No. But the WORDS, particularly "disorder" paired with "autism" are incredible. Just with that auditory stimuli, a schema of pathology, of harm, of danger, of misery, is immediately summoned. That's scary: all from a few words.

In the end, words do matter enormously, but they are not material. And all Evolution knows, were it to speak and walk about on legs, is that as living organisms, as devices for the dissemination of our DNA, we live, we breed, we die, QED. And maybe some of us are lucky enough to enjoy it in the meantime.

With the whole question looming overhead of whether or not NYU's Online Town Hall was censored by Dr. Koplewicz, I decided to email NYU asking for Dr. Koplewicz's explanation. It seems, given how few posts actually made it up, and that it sounds like there's a fair few posts which were made by autistic adults which were never included in the active forum, that there may have been some undue censorship on the part of Dr. K. and staff. However, as research is now teaching me, one doesn't assume, but conclude from the evidence. So far, the small amount of evidence does seem to point towards some censorship; however, we do not for sure know the real reasoning for that censorship, such as:

1) Were there so many posts from adult autistics of a similar nature that he felt only a few needed to be allowed so as not to make the conversation unduly repetitive and slow down the real purpose of the town hall?

2) Did Dr. K. just not want to get into this whole advocacy issue that many adult autistics are bringing up, so he censored posts of that nature?

3) Was Dr. K. inclined only to allow posts to which he could answer and make himself and the Child Study Center look good?

4) Was it a technical issue, what with non-Microsoft-related products, and many posts were never actually received? (Not so likely, considering I personally recall getting the notice following submission that my post was now in a queue to be moderated.)

5) Some other reason I can't think of at the moment???

So, to give him the opportunity to answer the censorship accusation, I have written NYU at the email address they had provided for the event (I was unable to find a direct email address for Dr. K. himself):

There is a rumor now starting to go around that NYU and Dr. Koplewicz purposefully censored the "free speech" town hall to only those posts Dr. K. wished to respond to. While some decorum is necessary in such an event, Dr. Koplewicz is being accused of unfairly censoring the town hall forum, according to the topics he wanted to discuss/allow.

http://dkmnow.wordpress.com/2008/02/26/nyu-silenced-voices/

I have already written a review of the event which I have sent to this same address, not including said accusation. As a reasonable person, I would be interested in hearing Dr. Koplewicz's side of the story, whether there was some logical rhyme or reason to the censorship (or even a technical issue), in order to prevent unfair press that may discourage future events of the same nature.

I would imagine that it'll take some time for me to hear a response-- that is, assuming I ever get a response. I will be very surprised if I hear back anything substantial. But I thought at least, before jumping to conclusions that shouldn't necessarily be reached, I'd give Dr. Koplewicz the opportunity to tell his side of the story and hopefully put to rest any rumors of unfair censorship on his part. --Assuming of course that he didn't unduly censor this event.

On a side note, it would be interesting to see ALL the posts which were submitted but never made it to the forum, regardless of the poster or the topic. We are assuming because so few autistic adults' posts made it up, that it was just our group that may have been censored, but there may actually be more taboo topics that were filtered out as well.