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.

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 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.

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.

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.

For those following the whole Psychiatric Ransom Notes/Online Town Hall issue, it has come to my attention that submitted posts may have been filtered for this "free speech" town hall which NYU set up yesterday.

For anyone who attempted to participate but whose posts were never uploaded onto the forum, please see dkmnow's blog post on the subject: Call for posts that were blocked by NYU's "Town Hall Meeting". He is asking for those who saved their posts or who feel they remember what they wrote well enough to write it again, to submit your posts to him so he can collect them together to show what DIDN'T make it into this free speech town hall meeting.

(Thanks, Cody, for letting me know about this.)

Okay, so there are critics for art, movies, food and restaurants, hotels, you name it. Me? I'm going to act as critic tonight for the online town hall meeting that the NYU Child Study Center set up in response to the Psychiatric Disorders Ransom Notes I'd posted about earlier.

THE BACKGROUND:

I found out about this online town hall from email updates and articles I receive from the Autistic Self Advocacy Network (ASAN) just yesterday. We were told the town hall would run from 9:00am-1:00pm Eastern Time today (February 26th). Once I clicked on the link, I was told I wasn't allowed to register until 9:00am the day of. So, dutifully, I waited. Come 9:30-ish, I registered and attempted to post my comment. I come to find later that the town hall was not to open until 11:00am Eastern, and that from 9:00am-10:59am was just registration time. 11 o'clock or so my time (Central Standard), I tried to repost. I am then informed that all posts must be okayed by the moderators before submission is allowed. So I waited. I decided to try and read through some of the already-uploaded comments; upon attempting to do so, I discovered that the website continually caused my browser to refresh every 7-10 seconds (and it may have actually logged me out, I can't be certain). Following my noon class, I came back to the town hall to check if my comment had been added: it hadn't. Instead, in its place, was the message:

Thanks to all who participated in the NYU Child Study Center Online Town Hall Meeting on children's mental health!</i>

A transcript of the meeting appears below.

We had a wonderful, overwhelming response and could not address every question during the meeting, but we will reply to all via email. Please be patient as we attend to individual questions in the coming weeks. Please note:If you submitted a question without registering or when not logged in, we do not have your e-mail address. Please submit your questions or comments to csc.comments@nyumc.org for a response.

With no little amount of frustration, I read through the small number of comments that had been uploaded as well as Dr. Harold S. Koplewicz's responses.

Following this message, it continued:

Among the many changes that participants called for included: encouraging better understanding of psychiatric disorders and the children they affect; ending the stigma that these children and their parents feel; creating a greater public commitment to supporting mental health treatment, services and programs; and treating psychiatric disorders like physical illnesses -as real illnesses that can and should be treated in all children, and covered by insurance at a parity level with physical illness. At the meeting, we truly saw a community that is committed to improving awareness and care for children's mental health. We look forward to working together to benefit the 15 million children and teenagers with psychiatric and learning disorders.

And the big issue that ASAN and many autistic adults took with NYU going into this meeting is that we adults get ignored. This is a country of autism in childhood but nothing in adulthood. Even Ari Ne'eman, head of ASAN, noted in the forum how one bestselling author with an autistic child announced that she didn't believe autism occurred in adults (apparently once the autistic child turns 18, they die or magically turn unautistic or something, I don't know). And with this town hall, it seems once again this is the case; our concerns aren't even given a footnote in NYU's review of the event. I realize, yes, that NYU is a child study center, so their focus is not on adulthood. But autism doesn't end after childhood, we're adults far longer than we are children, and for NYU to continue to inadvertently support the idea that autistic adults just don't exist only adds to the problem. Frankly, I'm surprised many parents didn't bring this issue up as well, since I have heard an overwhelming amount of talk from parents who worry what will happen to their child once he/she turns 18 and is no longer supported via education and many other social programs-- not to mention, if the person isn't fully capable of living independent lives, who will help him/her when the parents aren't there anymore? You can't ignore adulthood as though it's a separate condition.

In addition, as autistic adults, our input is frequently ignored, as though parents hold the primary right to affect autism in childhood. By all logical rights, one would expect the world would want to hear from those MOST affected (i.e., the autistics, themselves), particularly if they are capable of communicating their experiences and desires. But perhaps the reason most of us are ignored when it comes to "mental health" discussions is because we're usually not saying what the listeners (parents, practitioners, and researchers) want to hear.

So, instead of confronting the issue, Dr. Koplewicz avoided it by responding:

Clearly, these disorders are life-long in nature. Nevertheless, the NYU Child Study Center is dedicated to a very under-served population of children and adolescents with psychiatric, developmental, and learning disorders. Adult outcomes can be significantly improved with the appropriate diagnosis and intervention in childhood.

If he considers autism in childhood to be under-served, then the services available for autism in adulthood are nearly nonexistent!

THE TERMINOLOGY:

The thing which disappointed me most about this event was the terminology-- although I don't know what else I would've expected given NYU's background and focus.

disorder
illness
suffering

You get the idea. On the one hand, there was talk of support in calling the autism spectrum "mental illnesses" so they are not overlooked and remain untreated and unaccommodated. Excellent point. On the other hand, there was talk of the stigma attached to "disorder" and the implication that, had Evolution got it right, the person wouldn't be autistic; they would be "normal".

I don't know if there's an easy answer to that one when it comes to semantics and the potential strength of the meaning they can convey. What is in a word, right? Well, a lot.

Certainly there are a lot of difficulties inherent in autism, alongside the strengths, and for an autistic person to not get help they may need isn't right, especially if society only considers those who are labeled as "ill" have the right to treatment. At the same time though, how does it feel for an autistic person to hear that they are a "disease"? That everything that is inherent to them, that which makes them who they are-- their personality-- is a pathology? Not so good.

Something needs to change. But how to find the middle ground so we, as autistic people, can feel good about ourselves but can also get whatever help we may need to live as happily as possible? I don't know if there's an easy answer to that.

THE CRITIQUE:

My critique comes both from the perspective of an autistic adult who feels ignored by the larger mental health communities (as do many adult autistics) both intervention-wise, support-wise, and by society and the mental health fields often treating us as noncommunicative half-beings. But I also review this as a participant of the event itself.

1) Criticism One: Registration, as well as posting times, should have been made more clear in the instructions. Also, I would've liked to have seen registration opened up sooner than just 9:00am today, as well as more widespread advertising for the event.

2) Criticism Two: This town hall was far too short. Not only was it chosen on a weekday during a time when many will be working or in school, but the timespan offered little opportunity to get one's voice heard. Were I to have put this together, I would have had it run at least a week, trickling over onto a weekend, so more people could have posted and actually interacted. However, Dr. Koplewicz mentioned that this is just a first step and hopefully more is to come.

3) Criticism Three: All posts were moderated and had to be okayed by the moderator before allowing upload. During such a short period of time in which to actually submit comments and questions, this was a poor decision. Conversation would have been much more fluid had posts been automatically uploaded following submission, especially since everyone had to be registered in order to take part, and since the timespan of such an event was so brief there was little risk of inappropriate material being submitted. Were that the case, a simple deletion by the moderator would have sufficed and also given the moderator a lot less work to do.

4) Criticism Four: It may have been unique to my browser (Firefox), but the page continued to refresh about every 7-10 seconds, making reading and posting considerably difficult (or impossible perhaps for some).

5) Criticism Five: Once again, autistic adults didn't seem to hold the same footing as parents in this discussion, what few autistics there were. Do I think it should be the Child Study Centers mission to fix this problem? No, they're a child study center. However, their approach thus far only seems to add to the issue that adults are poorly under-served and ignored, and that providing intervention in childhood may be a good thing but it doesn't make the person UNautistic. Therefore, despite that this is a child-focused center, the broader lifespan should be the focus-- as with any developmental condition. A narrow focus tends to make for poor treatment.

6) Criticism Six: Most of the responses proffered by NYU (i.e., Dr. Koplewicz) seemed somewhat rehearsed, didn't really give much new information, didn't really offer new insights, and seemed, in essence, not all that helpful. (One could probably find similar writings online made by professionals in self-help articles, etc.)

IN CONCLUSION:

In this town hall meeting, basically VERY LITTLE HAPPENED. It was a first step, so I'll give them cheers for that. But it seemed more like a tool to placate critics of the earlier Ransom Notes campaign, with no concrete promises of alternate approaches being taken in future campaigns (aside from trying to avoid similar criticisms and outcry), and few new ideas or options being discussed. It was a mediocre attempt at pretending to listen.

RECOMMENDATIONS TO NYU:

If you're serious, do it again: put up another town hall. Even make monthly online town hall meetings so people can continually give their input, so that we can all help to improve the situations of autistic people and their families-- and not just kids, but autistics of all ages.

Dr. Koplewicz said this was just a first step: I hope he means it.

There's a great deal of animosity these days between autistic adults and parents of autistic children, especially regarding human rights issues. Many autistics support the notion of neurodiversity and are anti-cure (if a cure is ever possible); many parents are desperate to cure the disease which has stolen their child from them.

Kelly, a 14 year-old autistic girl and member of Aspies for Freedom (an autistic rights activist group), felt strongly enough about this issue 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".

Recently, this autistic girl received a letter from Autism Speaks, threatening a law suit. In this letter, they claimed copyright infringement, funds lost (via donations), and loss of support. Once Autism Speaks found out the owner of this website was in fact a 14 year-old autistic girl, they quickly redefined their demands, requesting she take down the site and in return, there would be no law suit. She complied.

I have looked over the new version of the site, which Aspies for Freedom quickly championed onto their own, www.ntspeaks.com. And no matter the animosity I may feel for such a conglomerate “non-profit” organization like Autism Speaks, Kelly's site does seem to overstep the bounds by directly using formatting, pictures, and the logo of said site. Parody is protected under US 1st Amendment law, but in parodies there is not a direct copying of the material being parodied. No matter how much I'd love to say that Autism Speaks was completely in the wrong, I don't believe they were in declaring copyright infringement.

HOWEVER, the things which I find most revolting and reprehensible about Autism Speak's behavior (or that of their lawyers) are:

1) That they used unnecessary scare tactics to intimidate to get what they wanted;

2) That they threatened to sue her not only for copyright infringement, but for funds lost (donations) because of her mock site, and one-millionth of supporter decline. They valued their loss at approximately $90,000;

3) The fact that they dropped the whole thing once they found out she was an autistic minor.

I imagine their biggest reason for dropping the threat of law suit was to avoid bad PR (although I doubt they ever intended on pursuing the matter since scare tactics with $90,000 sums attached usually get lawyers their way). But suing someone who they are also supposed to be "helping" would probably not leave them in such a favorable light. Sadly, the approach smacks of big business, not of a charity organization.

It is my hope as an autistic adult who is a supporter of neurodiversity, of human rights, and vehemently opposed to the greed of big business (whether it comes in the form of share-holders or non-profit) that this story continues to make its way to the press so people can know; so they can think twice when assuming that just because an organization says it's helping people, that doesn't always mean it is.

And frankly, any organization who says they speak for a given people (such as autistics) but prefers to ignore them instead when they do try to speak up, should not be an organization that gets your money.

 

This ad says:

We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives. This is only the beginning.

Autism

This ad is one of several from the NYU Child Study Center's campaign to raise awareness of several childhood conditions. While these ads have now been pulled due to a flood of outrage from autistics, parents, and professionals alike, there were still people who applauded the move, such as one parent who felt relieved because it encompassed how she felt and how difficult it was to raise an autistic child.

While I have no qualms with parents needing help and support, while I know that raising no child is easy and in particular an autistic child, ads such as these are normally better at encompassing the feelings of the caregivers and not the point of view of the person directly affected. The desperation is not usually that of the child, but that of the parent. The grief is not that of the child, but that of the parent. And this distinction is necessary.

As Jim Sinclair said, it is okay for parents to mourn for the child they expected and didn't receive. This is natural. But that this grief needs to be dealt with in a separate manner, to work through it. And then to move on, and love and accept the child they've been given.

True, it is not always as easy as this. But one thing which is easy is to stop this ridiculous hate campaign against a personified being that doesn't exist, this autism. Because it isn't autism, it is a person. If you as a parent or professional would be unwilling to take an autistic child aside and say, "I hate your autism", then I suggest rethinking these campaigns, because that's the ultimate take-home message.