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Neurodiversity on show

9 Jul

I think I’ve talked before about how the concept of neurodiversity is – as well as being heavily personal – not necessarily something that most people know actually exists as a defined word. What I mean is, some people do things or hold views that are quite obviously neurodiverse but might never have heard of the word or concept.

Googe Alerts sent me a fantastic blog post this morning which was about a story I’d missed due to personal illness. It seems a young autistic girl had gone to a restaurant with her family and were ejected because the girl had a meltdown and another family refused to pay for their meal until the family of the autistic girl were removed.

Renee, the blog owner, makes it clear how repugnant the attitude of both the restaurant (and this intolerant person who demanded the girls family were ejected) were:

Now I will admit that I don’t know much about autism but I do know enough to realize that those that have it deserve the same respect and dignity as anyone else.

I would _love_ it, if that was everyones starting point. How nice would it be to have that attitude as the prevailing one when it comes to autism (or disability in general)?

Thats Neurodiversity right there folks.

Renee, goes on to detail some very intolerant responses to the reported story. They’re nothing that most of us who are either autistic or parents of autistic people have not heard in one shape or other before:

I don’t care if a child is autistic or what, the child needs behaviour modification. In this case, the child should have been removed from the restaurant by a parent until the child calmed down.

Thats someone who doesn’t get it. Thats someone whos probable priority as far as disability goes is not to respect the persons essential difference but to try and ignore it and make sure it does’t inconvenience them.

Thats what Neurodiversity challenges.

I’ll leave the last word to Renee, along with my thanks:

When we refuse to see people who are living with a form of disability whether it be physical, or mental as worthy of sharing our space we are constructing them as less than. It is in this disharmony of worth and value that ‘othering’ occurs. Our ability to project difference onto others leads to dire consequences for those that are unable to fit into a model of what society has accepted as “normal.” Despite the fact that we are individuals and no true norm exists, socially what we expect is conformity to preconceived ideas of what validates personhood.

Bias, Stigma and Stereotyping and their Effects on Autistic People

8 Jul

One of the presentations I made at the University of San Diego Summer Autism Conference was titled Bias, Stigma and Stereotyping and their effects on Autistic People. In the talk I explained that one tool researchers use study bias is called the Implicit Association Test or IAT . I don’t have extensive knowledge about IATs but I know a little about them because when I was an undergrad at UC Davis (a couple of years ago) I had a volunteer position as a research assistant to a professor who used IATs to study bias, specifically bias against particular ethnic groups.

My job was to interact with the research participants (who were likewise undergraduates), one of my most important duties was to get a signature from each participant on a release form that explained their rights as test subjects. I also had a little memorized statement to tell them about what they they were to do and what they should expect while taking the test (on a computer). Afterward, I was supposed to answer any simple questions that they had and tell them how to contact the professor or a post-doc to answer more complicated questions.

Occasionally the students really wanted to talk about what the material used in the experiment or about how the experiment was designed, and occasionally I had time to talk about it with them. Besides directing them to direct their questions to the researchers, I told them that if they wanted to learn more about the IATs, in general, there was a popular book called Blink, by Malcolm Gladwell, that would give them a little more information. I also told some of them about the Harvard University website called, Project Implicit which is dedicated to sharing information about the Implicit Association Test and is also used to gather data from the (anonymous) people who take the tests online (for free).

The experiment with which I was assisting wasn’t designed didn’t give the “results” of the tests to each individual participant, their data were not “attached” to them as a person with a name, but it was aggregated, more or less, with dozens of other people’s data. But, if you take an IAT on the Project Implicit site, the computer tells you your “results”. Here’s a link to the Project Implicit website:
https://implicit.harvard.edu/implicit/demo/takeatest.html

Near the beginning of this presentation in San Diego I read the following quote:
Every man has reminiscences which he would not tell to everyone but only to his friends. He has other matters which he would not reveal even to his friends but only to himself, and that in secret. But there are other things that a man is afraid to tell, even to himself, and every decent man has a number of such things stored away in his mind. – Fyodor Dostoyevsky
Dostoyevsky was writing about what people know at different levels of consciousness. I would say that he was pointing out that there are things that people believe that they would prefer not to believe, and those things are sometimes subconscious. I got the quote from the Project Implicit website.

If you read the book Blink, you may remember that he explained that everyone has biases and we don’t all like or agree with our biases. We may even have subconscious biases against people of our own group or ethnicity. Those biases might be there because of negative portrayals of people of our own group in the media and in the dominant culture we are surrounded with.

This picture is a sample of a page from one of the IATs on the Project Implicit website. If you saw this particular page during a test you would have been instructed to place the face in the category on the left or the one on the right, and as quickly as possible. Basically, you hit the “e” key on your keyboard if you think the picture or word in the middle if the screen belongs in a category that is listed on the left of the screen, and you hit the “i” key if you think that picture belongs in a category that is found on the right side of the screen.

For this particular IAT photographs of faces of White Americans or Native Americans (all the photos of faces were from late 1800s as far as I could tell). So for this particular page you would probably want to hit the “i” key because this fellow looks like a Native American and that category is on the right side of the page at this point in the test. The photos of faces were interspersed with modern color pictures of places that were located either in America or in a Foreign country. I don’t remember which places they showed, but for instance, a picture of the Eiffel Tower, or the Great Wall of China, might be shown and if you were taking this IAT you’d decide quickly if it was a photo of an “American” place or if it was a “Foreign” place.

Project Implicit offers free access to some journal articles about IATs, as far as I could tell, they don’t have any that touch on bias and autism. But they did have a paper there called: Implicit and Explicit Stigma of Mental Illness: Links to Clinical Care. It’s by Peris et al. It is “in press.” Obviously, keeping in mind that this is not a paper about stigma and autism, but about stigma and mental illness, I think it’s still worthwhile looking at what these researchers found.

In total, 1,539 participants were interviewed online and took an IAT (not unlike what I described above, using a keyboard to categorize words as quickly as possible as belonging to a category shown on the left or right side of the screen. More than half of the participants had studied psychology. This group ranged from undergrads studying psychology up to practicing psychologists. The bulk of the participants were professionals who not only had training in psychology, but presumably lots of experience of being around people with varying sorts of mental illness. They also had a control group of people without psychology training.

If you download the paper you can get the details, but to give you a very brief idea of what they did. The experiment the participants were asked to report what they thought about mentally ill people. Quoting the paper:

Participants rated their attitudes toward “mentally ill people” on a 7- point semantic differential scale (1 = bad to 7 = good). Analogous scales were completed for two other common stereotypes about persons with mental illness: blameworthy/innocent and helpless/competent. Note, the same ratings were also made regarding “people on welfare” to match the relative comparison category used on the IAT measure. In this way, we could more readily evaluate the relationship between the implicit and explicit bias measures.

They took an Implicit Associations Test designed to look for implicit associations or biases that the participants might have that would tend to link mental illness with negative words.The test compared judgments about people with mental illness with judgments about people who are on welfare.

In the first sorting condition, items representing the category Mentally Ill People (e.g., diagnosis, disorder) were categorized with the same response key as items representing the category Good (e.g., wonderful, joyful), while items representing Welfare Recipients (e.g., unemployed, poor) were categorized with the same response key as items representing Bad (e.g., terrible, awful). In the second condition, Mentally Ill People and Bad items were categorized with one response key, and Welfare Recipients and Good items were categorized with the other.

You may have to read the whole paper and perhaps some other background information on IATs to understand how they are designed and scored in order to get the rationale behind the study design.

The participants were also shown clinical vignettes which were “DSM IV based” clinical descriptions of people with problems who could be diagnosed as mental illness. They also looked at one vignette of a person with “general psychological difficulties” that didn’t really fit into any mental illness category.

This study reported the interactions between explicit and implicit biases and “clinical decision making”. Explicit biases are ones that the participants self-reported. Implicit biases were those not stated openly, but were “implicit associations” that were revealed by the IAT.

The were some findings that I thought were possibly applicable to the experience of autistic people being treated or diagnosed in “clinical settings.” The more training a person had in psychology, and presumably the more exposure that person had to people with mental illness, the more positive view they tended to have of mentally ill people. Which is good news. The bad news, which is old news to most people, is that the controls which are meant to represent the average person on the street without particular training in psychology (when compared to those with training) had more explicit and implicit bias against the idea of mentally ill people. Mental illness carries with it a heavy load of stigma. It may seem natural enough for us to fear and stigmatize mental illness, but it’s not so fun for those with mental illness to deal with being treated badly and thought of badly simply because of a label, not necessarily because of anything in particular that they have done.

Back to the study’s findings, even though people with training in psychology tended to have relatively less bias the mentally ill, there was still enough bias among them to measure and make correlations with how they tended to see those in the clinical vignettes. Peris et al found that if a clinician openly expressed a bias against mentally ill people, that he or she would tend to give a worse prognosis for a person whose description he had read. A bad prognosis might look something like, “this person is unlikely to be able to remain employed,” or “this person is likely to harm himself or others.”

On the other hand, if the person openly expressed no bias against mentally ill people, but nonetheless showed a perhaps hidden bias against the mentally ill via the IAT, that person tended to give a better prognosis, however tended to “over pathologize” or add on extra labels, the paper called this, “over-diagnosis”. In over-diagosis the person described in the clinical vignette got additional labels that the writers of the vignettes didn’t intend. For instance, the person in a clinical vignette who had symptoms best fitting a single diagnosis of alcohol dependence might get additional inappropriate labels like, anxiety disorder or major depression.

To quote the paper’s authors: “… the finding of a link between bias and clinical decision-making is striking and suggests that negative views toward mental illness may influence clinical care, even among individuals with considerable mental health training.” Of course, the authors say that the study should be extended to see if the way the psychologists reacted to the clinical vignettes is the same as they would diagnose and give prognoses in their practices.

Coming back to autism, maybe we need the think about whether or not bias against autistic people could likewise influence clinical care of autistic people. It’s well known that parents will work to get clinicians to either give or not give particular autism spectrum diagnoses. A parent of a child with bipolar disorder may prefer that their child be diagnosed with Asperger’s since Asperger’s is still a recognized disorder or disability, but maybe it has a cachet of “genius” that bipolar doesn’t have. And if you are very much involved with autism at all you probably know that people will try to get a kid who generally would be seen as “Asperger’s” to get an “autistic disorder” diagnosis so that the kid can get more services paid for by some entity. And some parents of obviously autism spectrum kids pressure diagnosticians to take the label off their kid because they don’t want the child to be ….uhm… stigmatized. And, unfortunately some parents want to have their efforts at curing their child to be officially recognized as successful, so maybe they’d like to say, “See I gave my kid 5,000 methyl B12 shots and she had 40 rounds of IV chelation and 300 dives in an HBOT tank and it all paid off!” or maybe they’d like to say, “Selling our home and taking on extra jobs and begging money from all our relatives to pay for ABA therapy has left us in tatters financially, but we got our real boy back.” Of course, it is appropriate to re-diagnose autistic kids sometimes. Some do start out looking very autistic and end up looking close to normal, at least some of the time. You can watch a couple of talks by Deborah Fein on the MIND Institute website about this very thing. She points out that kids sometimes move from looking autistic to looking ADHD, perhaps plus OCD, or plus ODD or anxiety… which makes me wonder about how much the clinician’s biases are influencing the desire to rid the kid of a single diagnosis or PDD,nos and replacing it with mulitples like “ADHD plus social anxiety plus depression.” Hmmm?

We know that clinicians sometimes give negative prognoses for very small children, such as, “this two year old child is autistic. He will never marry, never have a job, you might as well lock him up now in an institution and get on with your lives….” and we also know that some autistics have lots of different diagnoses on top of an ASD. We might ponder about why that is, is it because of bias against autistic people and autism in general? We don’t know because, as far as I can tell no one is studying it. Autism clinicians are pretty much all assumed to be blank slates who don’t bring to the table their own biases that influence their ability to judge a situation fairly or accurately. Autistic people are, in my opinion, inherently “irritating” to most folks. We aren’t so ingratiating or charming, we aren’t precisely acting on typical social rules, generally speaking, to say the least. Still if you learn more accurate things about autism as opposed to stigmatizing misinformation such as is commonly found on the Autism Speaks website or from the mercury parent organizations where you may read that autistics destroy families and are walking toxic-waste carrying “train-wrecks,” or you may hear that autistic teens are tsunamis of fiscal devastation, thank you Stephen Shore.  If you learn the true things about autism and autistic people you may actually start to like autistic people. You might think we are pretty fabulous. I think we are pretty fabulous. If you listen to people like me say things like, “autistics are pretty fabulous,” you can actually start to think differently about autism and perhaps change your biases.

I also found three other papers that I thought were interesting, they were referred to in this book chapter on IATs. (Lane, K. A., Banaji, M. R., Nosek, B. A., & Greenwald, A. G. (2007). Understanding and using the Implicit Association Test: IV: Procedures and validity. In B. Wittenbrink & N. Schwarz (Eds.), Implicit measures of attitudes: Procedures and controversies (pp. 59-102). New York: Guilford Press.) You can request this chapter from the project implicit website.  It’s free.

Could similar problems caused by bias against autistic people be affecting autistic people now?

In one study, physicians who held stronger negative stereotypes of African American people were more likely to give them less adequate care after a heart attack. Or you could say, “Belonging to a group your doctor has a bias against can be bad for your health.”

People with a bias against African Americans score lower on a test of intelligence in the presence of an African-American person. Or, if you are in the presence of someone who has a bias against you you can expect them to behave less intelligently.

Stronger implicit stereotyping of members of a group was associated with more negative judgments of ambiguous actions by a member of that ethnic group. Or, if people have a bias against you they will tend to interpret your neutral actions as negative.

What biases or attitudes about the autism spectrum, autistic children and autistic adults might we be hiding from ourselves? Is this important to ask?

Does 'autism' disrupt? And what does it disrupt?

8 Jul

Interesting post in the Seattle Times today. The title is _”Autism disrupts work and pay, article says”_ .

The article in question is a new study from Pediatrics:

<blockquote>An emerging body of work is showing the impact an autism diagnosis has on a family….<blockquote>….families with a child with ASD were 7 times more likely to report that child care problems affected employment than comparable families with typically developing children. These accommodations probably result in lower household income.</blockquote></blockquote>

Now, I’ll be upfront and say that I know those circumstances to be true. A combination of my own diagnosis (of manic depression) and my child’s diagnosis of severe autism with associated learning difficulties has made things very difficult at times. It is a simple truth that I cannot progress in my chosen career (I am a web developer) much past the stage I am at now because doing so means committing myself  (excuse the pun) to a schedule of work I cannot possibly meet, given our home circumstances. A lot of my professional friends and colleagues who are about my age and are of a similar skill level to me are now either owning their own companies or heading up teams of designers.

But…is it right to say that autism is the disrupting influence? Obviously In my own life there are my own personal medical issues but even so, I do not think it is right to say that it is _this_ which is the disruptive influence.

It is a simple truth that much more is expected of workers of this generation. People of my parents age never had the work pressures we do now. Employees are expected to work ‘above and beyond’ if they want to progress. To work hours beyond – way beyond – their contracted hours, to never be ill, to keep holidays to a time that is non disruptive to the employer. We in the West have started to live to work rather than working to live.

For a family with a special needs child (of any age) it is simply not realistic that they can meet this expectation. And so we _do_ need to expect a less financially comfortable life.

But what is the disrupting influence? Is it autism? Is it manic depression? Is it Down’s Syndrome? Is it Cerebral Palsy? Is it any other physical or mental difference?

Or is it the demands of a society that is putting less and less stock on the family and more on work?

AAP and Paul Offit under attack (again)

7 Jul

Over on the Age of Autism, a new post has appeared which goes after the AAP (I thought everyone over there was big friends with the AAP these days?), its representative Dr Renee Jenkins and the AAP in general.

They (AoA) appear concerned about the newly formed Immunization Alliance which is an alliance of groups interested in children’s health and threaten that the formation of this group will put the AAP

<blockquote>…..in the middle of the line of fire for parent activism.</blockquote>

We have to question, first and foremost, what this has to do with autism. The answer is of course nothing. But that fast becoming the way with AoA. They posted over 100 posts throughout June and about a third of them were explicitly about autism or touched on autism. There were a lot about the speaking engagements of David Kirby, a lot of posts about the green our vaccines rally, a lot of posts about Gardasil and a lot of anti-AAP etc posts.

You have taken your eyes off the ball guys. You’ve forgotten what this is supposed to be about.

Anyway, the post goes on to say that the AAP announcement is;

<blockquote>Breathtaking in its dismissiveness of parent concerns…</blockquote>

Here’s the article in full:

<blockquote>

Immunization Alliance to develop compelling messages for parents
Anne Hegland
Editor in Chief

With pediatricians facing an increasing number of parents who question the safety of vaccines, representatives from organizations with a shared interest in advancing children’s health met May 30 to compare notes and develop strategies to help recapture public trust in childhood immunizations.

The newly formed Immunization Alliance, representing 15 groups, agreed that together they must work on short-and long-term solutions before falling immunization rates lead to further outbreaks of once-common and sometimes deadly vaccine-preventable childhood diseases.

Fresh in everyone’s mind were the measles outbreaks in nine states earlier this year.

Framing the challenges

Paul Offit, M.D., FAAP, director of the Vaccine Education Center at Children’s Hospital of Philadelphia, identified some of the factors contributing to the increase in vaccine refusal and the need for quick action:

• parents who have never experienced or seen vaccine-preventable diseases;
• media and Internet reports that are unbalanced;
• decreased trust in the government and health care providers;
• an increasing number of states allowing philosophical exemptions; and
• parent-to-parent spread of misinformation.

Dr. Offit pointed out that the majority of vaccine refusals stem from parents’ fears, with only 10% of refusals associated with parents who strongly oppose vaccines.

“We need to work on public messaging around vaccines — the benefit of vaccines — and to have the right messenger delivering those messages,” said AAP President and meeting co-facilitator Renée R. Jenkins, M.D., FAAP.

Underscoring the need for compelling vaccine messages is the No. 1 ranked resolution from the 2008 Annual Leadership Forum, calling for the Academy to lead a coalition that will develop a media campaign on the value of immunizations that can be marketed to parents, added Dr. Jenkins.

The group agreed that communication strategies must appeal to parents who are Internet and media savvy, and go beyond presentation of the science by engaging consumers on an emotional level. There was acknowledgement among attendees that messages from anti-vaccine groups’ helped erode public confidence in immunizations through their use of celebrities to deliver heartrending first-hand accounts.

“The greatest challenge is getting these messages out in a timely fashion. We’ve got August coming up, which is a big month for kids going to the pediatrician for back-to-school visits and for immunizations,” said Dr. Jenkins.

At press time, Alliance members were prioritizing strategies to be shared with communication experts who will help craft messages promoting the value of immunizations.

Messages for pediatricians

Meeting co-facilitator Margaret Fisher, M.D., FAAP, chair of the AAP Section on Infectious Diseases, said the Alliance’s efforts also are an effort to help pediatricians in practice, whose messages have not always been understood by parents.

“We’re all about what’s best for children, and what we’re trying to do is find a way to re-establish our trust with the public. We want to help provide our members with the messages and the method that can regain that trust and make it easier for them on a day-to-day basis.

“The public has lost trust in medicine in general — not in their individual pediatricians,” Dr. Fisher added.

The Immunization Alliance meeting was supported by the Tomorrows Children Endowment of the AAP.

Immunization Alliance

The following groups are represented on the Immunization Alliance:
• American Academy of Family Physicians
• American Academy of Pediatrics
• American College of Obstetricians and Gynecologists
• American Medical Association
• American Public Health Association
• Association of State and Territorial Health Officials
• Easter Seals
• Every Child By Two
• Immunization Action Coalition
• March of Dimes Foundation
• National Foundation for Infectious Diseases
• National Vaccine Program
• Parents of Kids with Infectious Diseases (PKIDS)
• Rotary International
• Voices for Vaccines

</blockquote>

Now maybe its just me but I didn’t see anything there that could be described as ‘breathtaking in its dismissiveness of parent concerns’. In fact, I think the AoA need a little lesson on numbers. You are not the majority, you are not even close. You are however extremely effective at marketing needless fear. But _this_ parents concerns revolve more around the effects of _not_ vaccinating rather than actually vaccinating.

The post goes on to describe how:

<blockquote>The AAP believes the decline in immunization rates is due to “anti-vaccine groups” and “celebrities” as if Jenny and a few websites are the only problem. What they fail to realize is that the message of groups like Generation Rescue would fall flat if there weren’t tens of thousands of parents who agreed with it. 8,000 people don’t march on Washington because of Jenny McCarthy and a few websites, they march on Washington because they know what happened to their child. If parents weren’t hearing our message corroborated in their own communities, there wouldn’t be an impact.</blockquote>

The decline in immunization rates _is_ partly down to ‘anti vaccine groups’ and ‘celebrities’. You pretty much _are_ the only problem. As I said, you are extremely effective at spreading your message. You have the marketing know-how and you have the money to do it. The _way_ parents are hearing your message corroborated is down to your adverts in NYT, down to appearances on Oprah, down to your blogging etc. But what you are doing is winching autism on top of hardcore anti-vaccinationism. People believe you because you have a patina of respectability. They don’t look past the first line appearance and see the multitude of times <a href=”https://leftbrainrightbrain.co.uk/?p=428″>your predictions have been wrong</a>, that your <a href=”https://leftbrainrightbrain.co.uk/?p=820″>hypotheses have failed</a> and the <a href=”https://leftbrainrightbrain.co.uk/?p=602″>threats of violence</a> that you make to those who oppose you.

And lets be honest, even if there were 8,000 people at the ‘green our vaccines’ rally (a figure that is <a href=”https://leftbrainrightbrain.co.uk/?p=856″>very doubtful</a>) then you don’t even come close to representing teh autism community.

According to the latest figures, autism is at a rate of about 1 in 150 (0.6%) of the population. For the US that’s about 1,827,219 autistic people. That’s 3,645,438 parents. As you are believers in autism epidemic (and thus don’t believe autism exists in adults in significant numbers) lets be kind and half that number to take us back down to 1,827,219 parents.

That means that your 8,000 parents totals about 0.4% of the US autism parent community. But lets double the attendees (and oh hell, lets add on 100,000 of people we’ll think of as followers but non-attenders) to make 116,000. That means you now account for 6.4% of autism parent community.

To put it another way, 93.6% of US parents of autistic people either don’t know about you (doubtful in this internet and celeb obsessed age) or simply don’t offer you any credence. And that’s being very, very kind to your numerical position indeed.

AoA go on to claim that:

<blockquote>…there are five major problems with the AAP’s new approach:

1. You can’t defend the assertions

The “fewer antigens” argument has been a Paul Offit special for years. Not only is this argument confusing for parents to understand, it also means nothing. Offit’s claim is based exclusively on the removal of an older Pertussis vaccine (which was causing many problems) decades ago.

What parents see clearly is how many more vaccines they are getting.</blockquote>

This reveals the anti-science beating heart of AoA. A vaccine is just a vehicle for its contents. The antigens argument _is_ the point:

<blockquote>”Of course, most vaccines contain far fewer than 100 antigens (for example, the hepatitis B, diphtheria, and tetanus vaccines each contain 1 antigen), so the estimated number of vaccines to which a child could respond is conservative. But using this estimate, we would predict that if 11 vaccines were given to infants at one time, then about 0.1% of the immune system would be “used up.””</blockquote>

<a href=”http://pediatrics.aappublications.org/cgi/content/full/109/1/124”>Pediatrics</a&gt;

<blockquote>

2. The news is making them look very stupid

With the Hannah Poling case, Dr. Bernadine Healy’s recent comments, the potential for an Omnibus decision going our way, Julie Gerberding retreating, the IOM revisiting the “environment’s” role in autism, and the case reports of children falling into autism after vaccines continuing to roll in</blockquote>

The Hannah Poling case? Please demonstrate where that showed that vaccines cause or contribute to autism. Bernadine Healy was at one time (and maybe still is, I don’t know) <a href=”https://leftbrainrightbrain.co.uk/?p=846″>a tobacco company shill</a>. Gerderding and the IOM are indeed revisiting the ‘environmental’ roles in autism. What’s that got to do with vaccines? And what case reports of children falling into autism are we talking about?

This is what I meant about a patina of respectability. On the surface, it sounds, _great_ – plausible – to the untrained eye. However, a quick peek beneath the surface and it starts to shake apart.

<blockquote>

4. They are not dealing honestly with parent concerns

If you have no safety studies verifying the issue of combination risk of so many vaccines, defending the schedule in its current form will backfire on you. If your best defense is to cite the 600 deaths a year from HIB now being prevented, parents will compare this to the 1 in 150 risk or higher of autism and make their own conclusions. By not acknowledging that the risk-reward of vaccines is potentially wildly out of balance, parents will not listen to you.</blockquote>

Are you seriously suggesting that people will be more worried about autism than _death_ ???

And, as I’ve demonstrated, I don’t think that organisations that speak to less than one percent of autism parents can really claim to have their pulse on what autism parents really care about.

The last one is ‘Offit is a time bomb’. I’m not really sure what the point there is.

Paul Offit gets more threats of violence

6 Jul

Over on the EoH Yahoo Group, Paul Offit (hated because he co-produced a piece of science that suggested that theoretically, infants could cope with thousands of vaccinations and there’s no science to refute it) is a figure of hate. True, burning liquid hate. He’s received:

<blockquote>…hundreds of malicious and threatening emails, letters and phone calls accusing him of poisoning children and “selling out” to pharmaceutical companies. One phone caller listed the names of Offit’s two young children and the name of their school. One email contained a death threat—”I will hang you by your neck until you’re dead”—that Offit reported to federal investigators.</blockquote>

And here we are again, on that font of all things Offit-hatred related, EoH, with yet another threat from yet another member. This time made on the Group itself:

<blockquote>From: Sophia Lauren <sophya_lauren@***>
Date: Thu, Jul 3, 2008 at 6:44 PM
Subject: Re: Paul Offit’s Panel Not Canceled!!!!!!!!!!!!!!!!
To: EOHarm@yahoogroups.com

I see him often. Almost daily in fact. You have no idea how difficult it is for me not to slug him. Or worse.

Sophia

http://justamom2three.blogspot.com/

</blockquote>

Here’s a lady who sees Dr Offit ‘almost daily’ and wants to slug him or worse. What can we find out about this lady? She has a blog so lets start there. Of course, she’s an anti-vaccine believer (except…y’know, nobody over there is really anti-vaccine, they just want to greeeeen them, right? Right. And if you believe that…)

Sophia Lauren (which I’m assuming is a pseudonym) who sees Dr Offit almost everyday is revealing in some of her blog posts. Leaving aside the usual anti-vax canards;

<blockquote>A mom with an adorable 15 month old little boy comes to our neurology center sent by referral from her pediatrician. Needs an EEG. *I’m learning EEG*. So we’re hooking him up and I start to take the history. Mom says he takes multi vitamins, and then dad says “yes he was fine until Monday when he had his vaccinations. He had a seizure Monday night and then again yesterday.” My mouth must have hit the floor. The mother knew immediately that I sensed something. *I wear a white lab coat, says “Neurology” on the sleeve*. I guess I look like a doctor.</blockquote>

and

<blockquote>*I’m in a “teaching hospital”* that thinks the vaccination schedule is just dandy. And they don’t believe there is a link between vaccines, seizures and Autism. But I do.</blockquote>

So, here’s a lady who’s currently learning EEG in the Neurology Dept of a teaching hospital and who sees Dr Offit nearly every day which I take to mean she works in the same hospital.

She closes that particular post with this little nugget:

<blockquote>The people who make Gardasil……Someone should euthanize (sic) them. One at a time. So they can all take a number and take turns and watch.</blockquote>

Yikes.

I was intrigued (and more than a little taken aback) by the venom in this person. So I went back to her earliest blog post to have a look. Here’s what I found at the end of the first entry (dated Aug 2007):

<blockquote>He (her son) is an Indigo Child….a Crystalline Child. One of the phenomenon that we are hearing more and more about. He is, in every way, an “Angel on Earth.</blockquote>

So there you go. Sophia Lauren who wants to euthanize (sic) people is an Indigo bleever. She mentions it again here:

<blockquote>I have three children. Brilliantly intelligent and gifted children. My oldest has the gift of high intelligence and an amazing interpersonal sense…they call him an “Indigo.” (www.indigochild.com). My daughter has her mother’s fire….and a gift for art and drawing that is unmistakable. My youngest has been blessed with a love and joy of life and the true gift of the “crystal child’s” disposition….he embraces every moment, every day, with a zest and unbelievable enthusiasm that should be bottled. (http://www.starchildglobal.com/) They all have “something”…some sort of a diagnosis that makes them, let us say “neurogically different.”</blockquote>

Hot damn Sophia! You’re saying that all your kids are neurologically different and yet its the vaccines???

Denial ain’t just a river in Egypt I guess.

For a truly disturbing post, check out <a href=”http://justamom2three.blogspot.com/2007/11/happy-birthday-dad.html&#8221; rel=”nofollow”>Happy Birthday Dad</a> in which ‘Sophia’ details how her Crystal Child son is actually the divine reincarnation of her dead father. I kid you not.

I’ll close this with a hope that this person can be identified and her threat of violence reported to the relevant authorities.

An Autism Hub Update

6 Jul

Last month, it became even more apparent to me that academia appreciates the Autism Hub.  I’ve always enjoyed a large proportion of visitors from .edu domains at Autism Street, and I’m sure the same goes for much more than a few hub bloggers. I mention last month, because that’s when a group of several Autism Hub bloggers were invited to present at the USD Summer Autism Conference (a second invitation). I would be remiss if I didn’t extend a “thank you” to Steve D of One Dad’s Opinion for his tireless effort in organizing our participation there. I would be even more remiss if I didn’t note that some outstanding people (like Drs. Anne Donnellan and Julie Robledo of the USD Autism Institute) in academic circles seem to have an eye on the future – they both seem to have a keen interest in adults with autism, and what’s coming from the real autism community in general. Of course, having an autistic child, it’s difficult not to appreciate those whose conference was titled, “Work With Me, Not On Me“.

At any rate, thinking a little more about an eye on the future, I proposed a minor facelift for the Autism Hub. As many of you are probably aware, the Autism Hub is no longer run by Kevin Leitch, so I sent the proposal to the current Autism Hub administrators. I was happy to learn that the proposed changes were accepted and implemented.

Have a look for yourself.

I’d like to take a moment and acknowledge the efforts of Kevin Leitch. His orignal Autism Hub designs paved the way for a true community tool that has enormous value. I also appreciate the fact that he does not oppose such changes (as communicated in an e-mail) to his original designs. The whole situation kind of reminds me of that moment when a parent lets go of something with respect to teaching their children. I would assume he’s proud that the Autism Hub stands on it’s own, but I would also assume he’ll view some things as potential mistakes (mistakes that are the Hub’s to make and learn from).

A minor visual redesign and a few potential mistakes aside, the long-term importance of The Hub is clear in my opinion. It remains one of a few unique places on the internet where one can find some of the best blogging from autistic adults (and family members and students/professionals) who focus on the important issues surrounding autistic people and the autism community.

Many thanks to Kev Leitch and everyone who contributes with their writing (or other skills) to The Autism Hub.

Poling Transparancy: correction

6 Jul

In a previous post, I commented (erroneously) that the HHS conceded the Hannah Poling case based on the expert reports and didn’t have the medical records. This was noted to be incorrect in a comment, and I appreciate the accurate information.

I apologize for taking so long to make the acknowledgment of the mistake more obvious (I had noted it in the comments).

The Docket shows that the expert reports were filed in December of 2007, 12/11/2007 and 12/13/2007. This is more than a month after the “Respondent’s Report” on 11/9/2007 (which I assume to be the concession).

In searching for those entries, I found a strange entry in the docket. Item 25, dated 12/14/2007 states

STATUS REPORT re deferring filing expert reports unless needed for attorney’s fees, filed by TERRY POLING. (Shoemaker, Clifford) (Entered: 12/14/2007)

I can see two meanings for this, and both are confusing to me (so are likely incorrect):

1) This is a status report requesting that the expert reports not be filed unless needed for the fee determination. But, they were already added to the docket. Would that mean that they would be pulled from the docket?

2) This is a status report on a previously entered request to defer filing the expert reports. In other words, a request was made previously and this is basically a statement noting that the previous request is no longer valid.

There are probably other explanations. The above are just speculations. Well, the comment that this entry seems strange to this reader isn’t a speculation, but you get the point, I hope.

Blog housekeeping

5 Jul

First off, my thanks to Sullivan for keeping the wheels on the blog turning for the last couple of weeks. I’ve been unwell and not felt capable of writing more than fairly basic posts. I’m starting to feel better now so hopefully I’ll be back and fighting fit soon.

Secondly, if you cast your eyes to the right you’ll see a ‘Zazzle Gallery’. This is a gallery of products I’ve done (Zazzle is a better version of Cafepress). The reason I’ve done them is two-fold. First off, its quite fun to poke a bit of satire in the direction of certain people (the t-shirts have print on the back as well). Secondly, its getting towards that time of year again – the time of year when I need to start thinking about paying for the site and I thought this would give another option rather than simply asking people to donate to site costs.

Thirdly, if you cast your eyes downwards, you’ll see the video section. I’ve had it on place for a few weeks now and (duh) only just realised that I make money from it. So far, I’ve apparently made the princely sum of $3. However thats not the point, I want to apologise to anyone who clicked a video without realising that they sent me a few pence every time they did. I should’ve noticed this earlier.

Fourthly, I want to thank everyone who participates in the weekly polls. I have to say that they are fascinating (seems like Autism Speaks need a good PR person!).

LB/RB has changed beyond all recognition in the five years since it started. The subject matter has changed from the personal portfolio page of a jobbing web developer to a two-fold website comprised of a web development/autism blog and a tutorial site for standards based web development to a blog about my autistic child to a multi-author blog about autism news, science and opinion. When it shut last year and then re-opened again I envisaged a long period of quiet as all the people who used to comment would’ve moved on but that turns out not to be the case. My daily visitor stats are a little down (I now have about 3,500 unique visitors a day as oppose to nearly a thousand more than that this time last year) but the comment section of each post is now a haven of discussion and debate rather than endless ranting and flame wars. The commenting absence of certain people (but they still read, I can see their IP in my logs 🙂 ) has created a much easier to manage site.

So, thank you loyal readers, thank you new readers – here’s to another 5 years!

I hope to hear from Tito soon…

4 Jul

I got a bit spoiled with the grey matter/white matter blog (gmwm.autistics.org). Not because it gave me a forum to explore my own ideas, but because it gave me a place to read more by Tito Rajarshi Mukhopadhyay.

Tito guest blogged a piece here on LeftBrain/RightBrain.

I miss reading Titoisms. I could use some crosseyed invisible kangaroos. I could use his uplifting statements.

I hope all is well with Tito. Tito, if you read this, know that I’d love to see something from you. I bet there are others who feel the same as well.

Cancelation letter for Judicial Conference Panel

3 Jul

As noted previously, a panel discussion for the Court of Federal Claims judicial conference was canceled. The exact reasons were unknown.

This letter or email from the Court (from Chief Special Master Gary Golkiewicz to the participants) announcing the cancellation has been posted by David Kirby to the EOHarm group (with a statement that Mr. Kirby will shortly post this, presumably to one of his blogs).

I am very sorry to inform you that it was decided to cancel the panel program, on which you were scheduled to participate, as part of the Vaccine session of the Court’s Judicial Conference. By way of explanation, the Court’s planning process starts with defining a broad overarching theme, moves to identifying speakers, and subsequently focuses through meetings and discussions of the planning committee on actual content of the panels. This process moves very quickly as materials must be to the printers by mid-July. As the planning of the vaccine session developed, it became apparent that the discussion anticipated from this panel did not fit the goal of furthering the Bar’s understanding of litigation under the Vaccine Compensation Program before the Special Masters or the Court’s judges (in fact, another non-vaccine related panel was eliminated after discussions determined that it did not meet the Conference goals of focusing on litigation related issues.) While I have no doubt that your discussion of vaccines’ benefits and concerns is extremely important to the overall understanding of the immunization program, and would be enlightening to all, it is simply a discussion not consistent with the Court’s Conference but is better suited to another forum. Thank you for your support and my sincerest apologies, Gary

From my limited perspective, I agree with the above. I’m sure that the panel would have been interesting and given some additional understanding of the varied viewpoints of the immunization program. However, the line I see as the heart of the letter is:

“….it became apparent that the discussion anticipated from this panel did not fit the goal of furthering the Bar’s understanding of litigation under the Vaccine Compensation Program…”

I’m sure that Mr. Kirby could give a condensed version of his recent talk, but would that further the understanding of litigation issues? Dr. Healy could, well again I am not really sure what she could bring other than the opinions of a prominent doctor in another specialty. Mr. Allen could have presented a better researched view of vaccines than Kirby and Dr. Marcuse could have trumped them all with actual research from his specialty. But, again, does this promote an understanding of litigation?

OK, I am being disingenuous. Mr. Kirby definitely could have added to the understanding. He could have added to the understanding of how this subject will not go away, not matter how much science is thrown at it. He could demonstrate how bad science will continue and how people will cling to “Medical Hypotheses” and self-contradictory statements.

It has been said that if you want to study genetics, fruit flies are a great testbed. This is because you can watch many generations in a relatively short period of time. Mr. Kirby, and likely Dr. Healy, would have been able to demonstrate to the Court that if you want to watch the “genetics” of bad science, the “mercury hypothesis” is a great candidate. The more research that is thrown at it, the more in mutates into something new. Mr. Kirby could have taken them through the “novel form of mercury poisoning” to thimerosal in vaccines, to illegal immigrants keeping the CDDS numbers high, to toxic plumes from China. He could have explained how the Verstraeten study was flawed because it was ecological in nature, but how the “generation zero” data is somehow valid in his view. He could have done this without even a hint of irony at his own misuse of the CDDS data for his own simplistic ‘ecological’ based arguments.

I guess that would have been entertaining at least.

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