I finally got around to creating a ‘Fan’ page on Facebook for LBRB as an alternative to the Networked Blog. I do understand theres an unofficial page floating around but please consider this the official LBRB page.
Also please take the time to click the ‘like’ box (below on the right) to add to the number of fans LBRB has (currently…erm…1…me)
OK, so not ‘new’ news. I want to look at this story’s opening as a kind of case-study into what binds and separates the autism community.
[researchers have]…found in a new study that autism can be partially explained by abnormalities in certain genes. The group’s results could, in the long run, pave the way for more appropriate treatments for autism.
Now, camp one, to which one could add the Age of Autism anti-vaxxers would snarl at the uselessness of this study. They ‘know’ that genes play little to no part in autism and that the real issue is that of vaccines.
Camp two, to which one could say shades into camp one and who you could add Harold Doherty to would bemoan the fact that yet another gene study had been done, would ignore the successes it has brought in terms of giving us more data and grump about how ‘the environment’ had been ignored.
Camp three, to which you could add Lisa Jo Rudy’s autism.about.com site would acknowledge that this was an interesting study but maybe ask valid questions about the context into which you could place this one single study. Knowing Lisa Jo she would also be interested in what exact therapies might be on offer as a result of this study.
Camp four, to which I would hope you could add LBRB and which possibly shades into camp three a little too, would be interested in the the story behind the science as well as the science itself, would hope to get an interview with one of the authors and would ask them what future science might ‘spin off’ from this study. Depending on the answers we might also editorialise a little on the need to be responsible with the science.
Just an interesting little game, of no import, as to how the community – itself a spectrum – is separated. Some say this is a bad thing and that we need unity. I disagree. I think we need diversity, as I do in most things. We even need an Age of Autism to play the token fool.
OK, so its well known to LBRB readers that I don’t think its ever been scientifically established that there has been such a thing as an autism epidemic but even so, looking at why autism numbers have changed over a certain period of time – the period of time people believe is part of the ‘epidemic’ – should be a good way to determine what contributed to that time periods rise in autism.
So thats what Peter Bearman did. Summed up well in this weeks New Scientist, Bearman’s study offers the first look at what actually did cause the ‘epidemic’.
Better diagnosis
Diagnostic changes are the most important influence. After 1987, the definition of autism used in California was broadened several times. Bearman and his colleague Marissa King examined the medical records of around 7000 Californian children with autism and found that one in ten had initially been diagnosed with mental retardation. Extrapolated to the state as a whole, they estimate that this change in diagnosis created almost 5000 extra cases of autism between 1993 and 2005, or 26 per cent of the increase of recorded over that period.Greater awareness
Social influence accounts for another big chunk of the overall increase. Parents are more aware of the disorder than they used to be, and so those whose children who have mild forms of autism have become more likely to seek out diagnosis.Bearman and his colleague Ka-Yuet Liu quantified this effect. They first estimated how the chances of a child being diagnosed with autism increase if he or she lives close to a child that has already been diagnosed. They then plotted the addresses of children with and without autism in California to calculate the number of children who had grown up close to a child diagnosed with the condition. They were then able to calculate the fraction of extra cases that would have been diagnosed as a result of social interactions. They put this figure at 16 per cent.
Older parents
The final contribution to the rise in diagnoses comes from demographics. Couples in California are having children later in life, as they are in much of the rest of North America and Europe. That is pushing up autism rates, because autism is triggered by genetic mutations that older parents are more likely to pass on to their children.Bearman and King calculated that these older parents are responsible for 11 per cent of the extra autism cases.
So these total 53% of the so-called ‘epidemic’. What about the missing 47%? Well, Professor Roy Grinker says:
Autism used to be highly stigmatised, in part because it was thought to be due to poor parenting. The removal of that stigma has made doctors and parents more willing to recognise the disease, which will have contributed to [some of] the extra cases…This and other social causes, together with uncertainty in the number of cases that can be attributed to the factors already studied by Bearman, could account for much or all of the unexplained half
But note Grinker doesn’t say it definitely does. This is because he knows as a careful scientist it hasn’t been looked at.
So what can we take from Bearman’s work? In my opinion we can take the fact that as soon as the questions regarding non-environmental causes were actually looked at and studied, there were numerical values that could be applied to their contribution. There are other non-environmental causes which Bearman didn’t look at which would probably be found to contribute to the other half.
What about the alleged environmental causes? It would not surprise me in the least if it were found that there were some. But as to what they are, the environmental lobby are still so hung up on vaccines they don’t seem to want to look at other possible environmental issues. Maybe its time they dropped the vaccine nonsense and got involved in some decent research. Just a thought.
Lives lost to autism is a new website with what seems at first glance to have an excellent reason for existence – to record all the non-natural deaths of autistic people.
But the name ‘Lives lost to autism’, the strapline ‘For many, autism can be deadly.’ and most particularly the statement ‘This site tells the story of the precious lives cut short by autism.’ are very misleading. Blaming autism for murder is utterly misleading. Autism didn’t murder any of the children listed as murder victims – or the ones that haven’t been listed either.
The site seems to be set up and run by Ginger Taylor (left) who’s position on autism has grown more and more extreme over the years. It seems now she is happy to denigrate autism itself as a murderous entity.
Should there be a site where victims of murder AND natural deaths are remembered? Of course there should, its a great idea. But to politicise it so graphically and so ham-fistedly is wrong. Its a testament to the ideas of Ginger Taylor and not a lot more right now.
According to study author Christine Ecker in today’s Guardian:
We know already that people with autism have differences in brain anatomy and some regions are just bigger and smaller or just different in shape…[o]ur technique can use this information to identify someone with autism.
The study used 20 non autistic controls and 20 autistic people – all adults – and found ‘significant differences’ in the grey matter areas of the brain which control behaviour and language. This is nothing new in itself, differences in brain structure have long been known about in regards to autism. Whats new in this study is the method – and resultant accuracy – of the detection of autism.
In the experiment, Ecker showed that her imaging technique was able to detect which people in her group had autism, with 90% accuracy. “If we get a new case, we will also hopefully be 90% accurate,” she said. The research, supported by the Medical Research Council, Wellcome Trust and National Institute for Health Research, is published today in the Journal of Neuroscience.
If this is established as a viable method (Carol Povey of NAS states that further testing is still required) then it’ll be the first true objective test for autism ever developed. So far, as everyone knows, autism is diagnosed based on the opinion of a clinician (or team of specialists). Whilst they will probably still play a role, this test offers an objectivity that would be unparalleled. It would also have the interesting effect of making the DSM diagnosis largely obsolete.
A new study is looking at how messages regarding vaccines are assimilated by the US public.
Immunization rates continue to be high but concerns about vaccine safety are increasing. Current communication methods do not appear to lead to more comfort with vaccines, making it more important than ever that state and territorial public health agencies, charged with promoting, monitoring and tracking vaccine use, understand the growing reluctance among parents and guardians to fully vaccinate their children and identify effective messages about the benefits of vaccines.
According to this report 5% of all respondents mentioned autism-related concerns and above average amount of people designated the statement:
Vaccines can cause serious health problems like…autism
‘convincing’.
and the conclusion states:
…Current communication methods based on scientific research do not appear to lead to more comfort with vaccines…
Reading this blog post one would tend to think it was a bad report for vaccines. Far from it, its wholly positive, which one will gather if one reads the whole thing. However, the aspect of the report I’m particularly concerned with (autism) shows that there is a growing trend of belief and a shrinking trend of science in what leads a parent to make up their mind. And apparently autism plays a relatively large percentage in that decision making process.
So what do we do about that? The science is clear that vaccines don’t cause autism but the US public seem to be ignoring such science. What else is there available that we can use? Because take note, we in the autism community have an obligation to society as much as they do to us. Their obligation is to do right by autistic people. Our obligation is continue to fight the idea that vaccines cause autism. If we do not then the public will believe that *all* parents of autistic people and autistic people themselves believe that vaccines cause autism – thats a very dangerous place to be.
OSR #1, a chemical invented as a chelator and now marketed as a dietary supplement, will be pulled from the market in about 1 week’s time if the message below attributed to Boyd Haley is accurate:
On 18 June 2010, the FDA wrote to CTI Science questioning whether OSR#1® fit within the agency’s definition of a dietary supplement, indicating that instead it appeared to be a drug. Although we believe the product meets the legal definition of a “dietary supplement,” we have decided not to contest this point but to work with the agency. While achieving formal drug approval is lengthy and costly, CTI Science will in the course of it prove to FDA’s satisfaction the safety and efficacy of OSR#1® and ultimately be able to offer OSR#1® to the public with FDA-authorized therapeutic claims.
As a result of this decision, *CTI Science has voluntarily agreed to remove OSR#1® from the market effective Thursday, 29 July 2010*. The product will not be available for sale after that date until new drug approval has been obtained. Please continue to access our website, http://www.ctiscience.com , for updates on OSR#1® in the future.
On a personal note, I have met most of the medical professionals we deal with, and your passion and dedication to excellence are rarely seen these days. It has been an honor to work with you, and I am deeply appreciative of the support you have shown in the past. Please accept my best wishes for your continued success. I look forward to working with you in the future again with OSR#1®.
Boyd E. Haley, PhD
President
CTI Science-Color-EM
CTI Science, Inc.
The Twitter account for CTI science has the following message posted earlier today which would suggest the above message is accurate:
Registered Medical Professionals: Please review your email for an important message about the future availability of OSR#1®. http://www.OSR1.com
I will say that I welcome this move. I agree with the FDA that OSR #1 is not a dietary supplement and, as such, should undergo much more rigorous safety testing before being marketed.
There has been much discussion here and elsewhere on the net about OSR #1, the chelation chemical sold as “oxidative stress relief” supplement. The latest round of this was sparked by a story in the Chicago Tribune, FDA warns maker of product used as alternative autism treatment.
Much of the early investigation of OSR #1, it’s origins as an industrial chelator and so on, were done by Kathleen Seidel of Neurodiversity.com. Ms. Siedel is probably the most thorough blogger (or writer of any kind) I know of. Her posts are long and detailed and well referenced.
Her recent post, OSR: The Littlest Consumer, takes on the subject of internet reports of OSR being given to small children. The website for OSR (CTI Science) states, OSR#1TM is not recommended for children under 55 pounds or under 4 years of age.”
And, yet, OSR appears to be being given to small children. Also, if the internet reports are accurate, this occurs sometimes under the advice of DAN doctors.
People interested in a thorough discussion of OSR can reference previous articles by Ms. Seidel include:
Haley’s Chelator: For Cats Or For Kids? (April 26, 2008)
A Fine White Powder (August 1, 2008)
The Industrial Treatment (August 8, 2008)
An Inquiry Emerges (August 14, 2008)
FDA To Haley: OSR#1 A Misbranded, Mislabeled, Unsafe Drug (June 24, 2010)
OSR: Fuel For Thought (July 7, 2010)
OSR: A Bevy Of Adverse Events (July 12, 2010)
There are events around the autism blog-o-sphere that are troubling as of late. Events which bring up the question of bullying in a very real way.
First some background:
Andrew Wakefield is on a book tour. He has spoken at a park in Chicago and to small groups in New York, Phoenix and London. Events surrounding these engagements have very strange, if you ask me. And it is getting stranger.
The Chicago event was, well, a bit of damp squib, to quote Kev. Not a big event, even though it was timed to coincide with a large autism parent convention. Many of the attendees were actually skeptics who showed up as a bit of a silent protest.
The event in London was originally billed as “Dr. Andrew Wakefield is at a secret location in London with a select group of ticket holders for a book signing and Q&A session.” At one point it was going to simultaneously shown as a pay-per-view on the internet (something like $70, if I recall correctly), but ended up being free. The event location was kept secret at first and is reported to have been moved with vague comments of “threats”.
Frankly, I take any possibility of threats seriously and I worried that this might be serious. While I disagree with much of what Mr. Wakefield has to say, I would strongly condemn any threats to his talks.
When I heard that there was controversy about Mr. Wakefield’s Phoenix appearance, I took it seriously and wanted details.
The Phoenix event was held at the Ritz-Carlton Hotel. Prior to the event, one skeptical blogger emailed the Ritz-Carlton. She states that she emailed the Ritz-Carlton twice. Below is her communication:
Andrew Wakefield June 26 at The Ritz in Phoenix
Dear Sir / Madam,
I’m writing to express my extreme disappointment that such a well thought of hotel as the Ritz is playing host to this event on Saturday.
Disappointingly, The Autism Society of Greater Phoenix has chosen your venue to promote unsupported quack therapies and to support Andrew Wakefield, a man whose scaremongering has led to disastrous falls in vaccination levels among children. Levels have fallen so far that measles – a potentially fatal or crippling disease, even in countries with good levels of health care such as the UK – is now reported as once again being endemic here. Vaccination is arguably the greatest medical invention or discovery of our age, and has without doubt saved more lives worldwide than any other medical procedure. Hosting a book signing by Mr Wakefield would only indicate support for his unethical methods (including taking blood from children at a birthday party, and carrying out colonoscopies on vunerable autistic children for non-medically indicated reasons)
Many anti-vaccine activists want to return us to an age of deaths from preventable illnesses, claiming, against all evidence that vaccines are harmful, simply in order to promote their own agenda.
Andrew Wakefield is not a brave, maverick doctor, fighting the establishment, as The Autism Society of Greater Phoenix would have it; rather he has recently been struck off the medical register for horrific breaches of ethics involving non-indicated clinical procedures on children and undisclosed conflicts of interest.
Should you allow this event to go ahead, I fear your company’s reputation will be seriously tarnished, and respectfully ask you to reconsider your decision.
Best regards,
Rebecca Fisher
Andrew Wakefield – GMC ruling: http://www.gmc-uk.org/Wakefield_SPM_and_SANCTION.pdf_32595267.pdf
Vaccine preventable diseases – American Academy Of Paediatrics: http://www.aap.org/pressroom/aappr-photos.htm
The AutismOne newsletter portrayed the blogger’s actions as:
Rebecca Fisher: Pharma Blowhard or Concerned Citizen?
You can’t be a parent in this community without bumping into them. Every article, TV program, blog or radio show brings them out in force. The mention of “autism” or “Dr. Wakefield” brings them scurrying out from under their rocks snapping and snarling and spitting about the wonders of vaccines and their self-anointed roles as concerned citizens in protecting the pubic health.
It’s a scam and we all know it. Most of the bloggers, poseurs, and self-ordained autism experts have ties either directly or indirectly to pharma or mainstream medicine (which is really one and the same thing). Age of Autism has done a remarkable job outing Orac and shedding light on the soft underbelly of the vaccine apologists.
Rebecca Fisher of the UK has been very busy lately. Blogging here under the title “JABS Loonies – Justice, Awareness, Basic Support and Mind Blowing Stupidity,” Rebecca recently left the Internet safety of anonymity to engage in more concrete acts of aggression against our community.
Rebecca’s current mission is attempting to frighten, bully or pressure venues Dr. Wakefield is scheduled to speak at on his current book tour into canceling the event. Hotels are under siege by email, fax, and phone demanding they cancel Dr. Wakefield’s appearance.
For a week before this past Saturday, Rebecca attempted to intimidate the Phoenix Ritz-Carlton site of Dr. Wakefield’s latest talk into capitulation. To their credit the Ritz told her, in essence, to take a hike.
Rebecca, who also blogs as Becky Fisseux, will continue to act in a dangerous and reckless fashion until she is outed and her connections to pharma publically revealed.
Still the attacks will continue until we take legal and other appropriate actions necessary to incur real costs on those who spread lies and misinformation.
Unfortunately, the Ritz-Carlton Phoenix will not comment on the event. Ms. Fisher make a reasonable list of alleged facts that are unsupported within the complaint raised in the AutismOne newsletter. She requests proof that:
[She has] sent any more than two emails to the Ritz Carlton Group
She has] have ever telephoned the Ritz Carlton Group
I have ever sent a fax to the Ritz Carlton Group
I contacted the Ritz Carlton Group on more than one day
I used language that could be construed as “bullying”, “intimidating” or “harrassing” in my two emails (actually just one email, sent to two addresses)
The Ritz Carlton told me to “take a hike” – or in fact contacted me in any way
The AutismOne newsletter references recent events involving the blogger Orac at Respectful Insolence. It doesn’t speak well of AutismOne that they believed the Age of Autism blog piece about Orac. That piece claimed that the surgeon behind Orac had undisclosed financial ties to a pharmaceutical company, leading to a campaign to get him fired from his job. Seriously, people were encouraged in the comments on AoA to contact his employer. It is a pretty low moment for the Age of Autism. (if you are curious, Steven Novella takes apart the claimed conflict in his piece Age of Autism Witch Hunt.)
It would be all too easy to claim that the threats (and real) intimidation level is rising. I don’t know if that is the case. In recent years a blogger was expelled from an AutismOne conference for asking a tough but pertinent question of Terri Poling (mother of Hannah Poling, whose case before the vaccine court was very important–and will be again once the final settlement is reached and announced.) AutismOne is reported to have ejected journalists as well.
It is worth noting that blogger Kathleen Seidel was subpoenaed by vaccine injury lawyer Clifford Shoemaker.
I take threats seriously, as I stated above. I take bullying seriously too. It is worth questioning whether this statement “Rebecca’s current mission is attempting to frighten, bully or pressure venues Dr. Wakefield is scheduled to speak at on his current book tour into canceling the event” is really upheld by the facts. Since the Ritz-Carlton will not comment, I will await some sort of substantiation that what Ms. Fisher has done constitutes “frightening” or “bullying” or “pressure”.
I’ll leave you with the final line from the AutismOne newsletter piece on this:
“Still the attacks will continue until we take legal and other appropriate actions necessary to incur real costs on those who spread lies and misinformation.”
“No detrimental effects whatsoever”. That’s what Matthew Isreal has to say about the shocks used as aversives. I somehow remain unconvinced. The Judge Rotenberg Center has now come under the scrutiny of the United Nations Special Rapporteur on Torture, who has called on the Obama administration to investigate the center.
Obviously, major electrical shocks can be quite harmful. The most serious physical damage occurs when current passes through organs, like the heart. The JRC device appears to be designed to keep the shocks local. At about 50 seconds into the video they apply an electric shock from one of the JRC’s devices to the Nightline commentator. The shock is applied to her arm, but watch her leg twitch. The effects aren’t exactly localized, are they? That is troublesome to me because we don’t know what is going on internally from the shock.
As to emotional long term side effects, who knows? Seriously, can Dr. Isreal really make the claim of “no detrimental effects whatsoever”? Based on what evidence?
From a previous press release criticizing the JRC
The Judge Rotenberg Center (JRC) in Canton is believed to be the only facility in the country that uses often painful electric shock therapy on disabled children in order to alter behavior. In 2007, the State launched a criminal investigation into an incident where a prank phone call to the school led to the repeated electric shocking of two individuals in the dead of night. One of them, a child, was shocked 29 times, the other was shocked 77 times – sometimes while restrained, causing burns so severe they needed to be treated at a hospital. That investigation is apparently ongoing. In October 2009, the JRC made headlines again when Director Matthew Israel was fined by the Massachusetts Division of Professional Licensure for allowing 14 unlicensed employees at the school to use the title “psychologist.”
http://abcnews.go.com/assets/player/walt2.6/flash/SFP_Walt.swf
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