Archive | ARI RSS feed for this section

On media, neurodiversity and science

29 May

Opinions vary as to why I, and many of my online friends believe what we do. The answers cannot be easily encapsulated but an indication is given by the source of the two links I’ve just linked to.

The first group believe autism is not just a disability, that it is both more and less than that and that whatever the aetiology of ‘it’ is, it is likely to not have a single cause and further, if it does or if it doesn’t, the fact that people are autistic is a state of being (a property of their personhood) that is deserving of respect and tolerance. After all, if we can tolerate difference between sexes enough to think of a toilet seat that raises or lowers as a natural aspect of functional life then we really should be able to make the minor adjustments necessary to accommodate the needs and requirements of autistic people.

The second group believe in the scientific method. They believe that in matters of science, that the rules of science should be applied.

There is some major overlap between the position of these two groups. There are a number of bloggers on the Autism Hub and an even larger number of readers of blogs on the Autism Hub who are bloggers on Science Blogs and/or readers of Science Blogs’. A number of bloggers who have autistic children are scientists of various disciplines.

It is worth noting however that these two groups are not synonymous. I know of a few people who believe in the basic essence of neurodiversity who also think vaccines damaged them or their children. This is because they know that even if vaccines did do damage, they or their kids are still deserving of respect. Conversely, I expect there are a few science bloggers who would not agree with the standpoint of neurodiversity and would ferociously chase a cure.

But these people are the exception. By and large these are two groups who share a mutual opinion that the only way to progress our knowledge of the science of autism is to use the scientific method. Science is now, thankfully, beginning to catch on to the idea that the best way to get knowledge that may help autistic people is to listen to autistic people.

At MIT Amanda Baggs has been working with the science team there in ways that will result in positive and scientifically valid ways of helping autistic (and other) people.

Estée also gave a presentation at MIT (the second talk was fuller than this one) and she also noted Michelle Dawson’s ongoing role at the University of Montreal.

This is all good progress. It’s exciting to watch these things develop and to see the possibilities that might spring forth from these alliances and how they might benefit my daughter and autistic people generally.

I believe in the scientific method. I believe science has done more than anything else to take us closer to understanding the universe within us and around us. I believe that the naturally occurring alliance that is being forged between autistic people, their allies and science is absolutely the correct way to go. Neither side is seeking to change or alter the other but to understand each other and benefit from the union.

If I want to see an example of how _not_ to do things, I need look no further than (you guessed it) the mercury militia/malicia. These are people who have taken the polar opposite view. They eye science with distrust. They refuse to accept that the results of studies that disagree with their stance can be correct to the extent that they threaten those scientists with violence, or they ignore science and instead disagree with the wording of press releases about science. In fact, this is Lenny Schafer’s view (from a past SAR):

Myself and other autism activists believe there is enough evidence to support a causative relationship between mercury and autism in a court of law, in front of a jury, where standards of evidence are different than that of the narrow focus of scientific findings. And if you can convince a jury, you can convince the public.

Make no mistake, by ‘different’ Schafer (correctly) means looser, way, way looser. He does not want scientific standards to come to play in determining the vaccine/autism connection. The reason why is absurdly obvious.

The scientist and author Michael Crichton once gave a speech about environmental issues that may as well have applied to the autism/vaccine issue:

…Proponents are pressing their views with more PR than scientific data. Indeed, we have allowed the whole issue to be politicized—red vs blue, Republican vs Democrat. This is in my view absurd. Data aren’t political. Data are data. Politics leads you in the direction of a belief. Data, if you follow them, lead you to truth.

On the EoH group where Lenny Schafer is kingpin, there is currently something of a growing schism between Lenny, John Best (e.g. the more hardcore loony element) who believe that Aspergers Syndrome is not a disability and is not part of the spectrum and hence is not autism and a lot of other people who quite obviously have AS kids and are disagreeing very strongly with Lenny’s extremeism. As part of that debate, Lenny made the following statement:

I would like to think of what we do here is public debate, not “fighting”.

This illustrates perfectly the kind of denialism that exists amongst Lenny and his members. The Yahoo EoH group is a closed access list. You can only access the group if you join up and are accepted as a member, which is what I did back in 2005. Yet Lenny really believes that this closed access list is public debate. He _has_ to believe this as he is a firm believer (as we have seen) of political and legal definitions of autism and autism aetiology. In his world view, you need to _manage_ the PR. You need to nudge it in the right direction, much as Lenny’s colleagues from the NAA did when they lied about Paul Shattuck as they disagreed with his results.

By contrast, the Autism Hub bloggers operate openly. Their opinions are challengeable directly on their blogs. Good science is challengeable. It can be challenged by using the scientific method. There is no ‘management’ of information going on here. No one flip-flops between crucial elements of their beliefs and hopes no one notices (such as Brad Handley has done).

The interviews I have done (and am doing now) have been to periodicals that concern science or touch on the science of autism from a parents perspective. I noted with no small amusement this morning that ‘the other side’ are resorting to interviewing each other – Erik Nansteils Autism Media site carries an interview of David Kirby interviewing Katie Wright. I bet that’s an in-depth and truth revealing interview.

I believe that promoting connections between autistic people and science is the absolute best way to get good science regarding autism. I hope to do my bit in making the web work _for_ the promotion of these connections. I hope that our growing community never gets sucked into the tarpit of closed access lists that crow about the achievement of ‘converting’ celebrities and media persons. This is why I set up the Autism Hub and the Autism Parents Forum. So that we can grow as a community and come closer together. I hope to do more of this in the future. I want my email contact list to be full of the names of autistic people, scientists, responsible authors such as Arthur Allen and Brian Deer and parents that, like me, want to benefit from this growing relationship. I couldn’t care less if I never get Lou Diamond Phillips or Don Imus’ email address.

Media and politics or science? When it comes to understanding the science of autism, which will yield better results? Bear this in mind as you consider your choice – science is amoral. You cannot hide, distort or disfigure scientific achievement forever. If something is scientifically accurate, its truth is self evident. No matter how many politicians you have in your pocket, no matter how many media contacts you have, gravity will always be a force of attraction. The power of repulsion belongs to those who would deny that.

DAN! Doctors – The ‘other’ list

12 May

The eagle eyed amongst you will have noticed a new main menu entry at the top of this page between ‘wiki’ and ‘contact’ called DAN! Doctors.

This page contains a (worryingly long) list of some of the people with the loose honorific of ‘DAN! Doctor’ who are on the official ARI list. However, unlike the ARI list, this list will tell you the ‘other’ side of the happy-clappy hero’s of DAN! It contains notes on prosecutions, license suspensions, criminal acts and current investigations.

I can take absolutely no credit for the compilation of this list. It was handed to me by someone who wishes to remain anonymous.

This is a static page at the moment. In the near future, this page will move to its own domain and website and be driven by a database backend as it grows (as I’m sadly sure it will) however I wanted to get this up as quickly as possible.

The bottom line is that over 10% of DAN! docs (that have been looked at so far) have been in trouble. Trouble ranges from killing a patient, to paedophilia, to gross negligence to tax evasion. If you know a parent considering a DAN! doctor then make sure they read this list first. At the very least, even if they do decide to go ahead, they can avoid the bad guys.

Katie Wright and Autism Speaks – woo confirmed

29 Mar

For the last few weeks the subject of ire on the EoH maillist has been Autism Speaks, they’ve been the subject of some very nasty descriptions indeed. The reason is that the EoHers knew that Katie Wright, daughter of the owners of Autism Speaks, was taking her son Christian to a DAN! doctor and yet Autism Speaks were keeping this quiet.

Well, as blogged by David Kirby, Katie Wright has now confirmed that Christian is seeing a DAN! doctor (lets hope its not one of the paedophiles or Scientologists) and has gone ‘on the record’ as stating she believes vaccines caused Christians autism.

The mercury militia and David Kirby report this:

Many in the upper echelons of Autism Speaks have rejected any environmental hypothesis and insisted that autism is purely a genetic disorder — though Bob and Suzanne Wright (and the organization itself) remain officially neutral on this crucial question.

But now, Christian is getting better, and that wonderful news could change everything.

Well, firstly, I can’t recall anyone from Autism Speaks insisting that autism is purely a genetic disorder. If they did I think they’d be just about alone. Secondly, ‘Chrisitan is getting better’. Really? How is that described exactly?

“He’s definitely getting better,” Katie told me by phone. “He was a very sick kid, with an extended gut and inflamed intestines. We couldn’t do anything until we got that under control.” But once Christian started to improve physically, she said, he also began to get better emotionally, mentally and cognitively.

When Christian’s gut improved, his parents began trying other, still-unproven treatments like dietary changes (no wheat or dairy) chelation therapy (removal of heavy metals from the body) and methyl B-12, which could help restore a critical process called methylation – a needed tool for detoxification and proper nerve function that is apparently deficient in some autistic children.

“Christian is speaking now, though only when prompted,” Katie told me. “His eye contact is returning, and his crying and tantrums have subsided.” And she said, “His ability to attend has returned. Now he can sit and do his lessons and learn, whereas before he would just lie down and scream in pain, because his abdomen hurt so much. But he still has a long way to go.”

Perhaps most heartening to Katie is that Christian can now tolerate being in close contact with his brother, something that used to send the boy into screaming fits of anxiety.

Well I too am glad that Christian doesn’t have these gut problems anymore. But these aren’t autism and have nothing to do with autism. My daughter, who is also autistic, has never had an ‘extended gut and inflamed inststines’. Thats not to downplay Christian’s problems but its simply not realistic to equate these things with autism.

Christian (who is 5 and yet described by Kirby as a ‘toddler’) displays very similar behaviours to Meg at five (and at three) – she didn’t speak at all, she struggled with eye contact and she had big meltdowns. The thing she has in common with Christian is that their changes have occurred as they have grown older.

Kirby goes on to say:

So how will some Autism Speaks officials react to Katie’s statements? They could fall back on two recent, but highly inconclusive studies that support the autism-is-genetic paradigm, and continue to reject the environmental hypothesis. But I wouldn’t bet on it.

I’m unsure exactly what two recent genetic studies Kirby is talking about as he doesn’t name them but if they are written by decent scientists then I highly doubt they have written an off-the-cuff rejection of an environmental aspect to autism. If anyone does know what studies Kirby is referring to please say so I can check for myself. I find double checking Kirby’s words often reveals interesting things!

But hsi question is a good one. How _will_ Autism Speaks react? They are a ‘house divided’. They have the scientific teams that they inherited from NAAR and they have their ‘in house’ members that are media people. Will they go for the media or for the science? It seems that Kirby and the mercury militia are in no doubt about which way they _should_ go – they want a media driven Autism Speaks. An organisation that abandons science for woo.

It should be noted that the mercury militia are very, very good at media manipulation. From Brad Handley’s full page ads to Katie Wrights levering of Kevin Barry to get onboard Autism Speaks and of course, David Kirby’s fact free and often hilarious debating points. These are not people who let a media chance go unexplored. However, they cannot force science to show something that it does not.

Autism and Scientology again

9 Mar

Awhile ago, I wrote a post the detailed the disturbing links between the DAN! movement and scientology. It transpired that scientology – being a movement that is big on non psychiatric modes of treatments is a good fit for DAN! adherents. Both value detoxification for a range of things and it seems Scientologists have not been slow to ingratiate themselves into the DAN! movement. So far, I’ve identified three Scientologists who are also DAN! Doctors. One of them was involved in the death of a parent of a schizophrenic man in 2002.

One of the darlings of the autism/vaccine movement is Julia Berle who’s son, Baxter, was used in a Generation Rescue advert. Ms Berle is a frequent poster to various autism/vaccine groups. Her signature reads;

Julia, mom to Baxter, recovered in 2005, Founding Parent of Generation Rescue

As mum to a recovered child, Ms Berle’s opinion is sought in many places and she never stints from dispensing the advice she got far and wide.

Baxter Berle was diagnosed (at least partly it seems) by Scientologists. If I may quote myself:

Baxter Berle attended a school called ‘The Learning Castle’ which is an alleged elementary ‘feeder’ school for the Renaissance Academy with which it shares a campus (there seem to be about seven separate units on campus all feeding the Renaissance Academy). Here’s a little bit of information about the Director of the Renaissance Academy, Ann Hazen;

Renaissance Academy is truly bringing education back to life through the use of a full academic program, athletics, the Arts, a warm and caring staff coupled with the brilliant study and educational philosophies of humanitarian L. Ron Hubbard.

Yup, they’re Scientologists too.

So Scientologists had a big say in the diagnosis of Baxter Berle. What about his recovery? I was recently forwarded this email by a member of a autism/vaccine group Ms Berle is also a member of:

— begins —

Re: Opinion of Dr. Nancy Mullan ?
Sun Jan 28, 2007 6:25 pm
— In autisminterventionsocal@yahoogroups.com,
“djberle” wrote:

Hey there,

We used Dr. Mullan to recover Baxter. I like that she stays cutting edge on top of all new topics as it relates to autism. She attends numerous conferences to stay current. I also highly respect her availability to parents and compassion to “work with you” on
all aspects (to include financial to some degree). She cares deeply for our children and wants to help them….Our experience with her was very positive. I refer her often to other local. parents. I also refer Dr. Hirani as she helped us as well.

— ends —

So Dr Mullan recovered Baxter. Dr Mullan is also a Scientologist. She is the Medical Director of the Scientology owned Safe Harbor organisation. She also used Dr Hinari who studied under Julian Whittaker – another doctor with Scientology connections.

Here we have a situation where Scientologists have (maybe) diagnosed, treated and recovered a boy. This boy was subsequently turned into one of the poster children for successful recovery by Generation Rescue (of whom Ms Berle describes herself as a founding member).

Maybe I’m just a cynic but this reeks of ‘set up’ to me.

Jeff Bradstreet deserts the sinking ship

12 Feb

Cast you mind back, dear Reader, to July last year when the RhoGAM ruling failed to find general or specific causation for thiomersal causing autism. That little episode has taken a heavy toll on the ‘expert witness’ status of both Mark Geier and Boyd Haley, both of whom were eviscerated by the presiding judge.

But, hey, at least they had the guts to stick around. Some people decide to do a runner at the first sign of trouble.

Enter Jeff Bradstreet, advocate of <a href="exorcism (yes, really) for treating autism.

In September of 2006, Bradstreet was the designated ‘expert witness’ in a case of Aventis Pasteur, Inc. v. Skevofilax, the latter being a family that filed suit on the claim that:

…their minor son’s autism was caused by toxic levels of mercury contained in thimerosal, a preservative used in the vaccines.

This trial ended abruptly when:

After three amended scheduling orders and nearly eleven months of discovery, Respondents’ sole expert on specific causation withdrew from further participation in the case without ever having rendered his expert opinion.

There’s a lot of legal stuff going on in the background of this case regarding whether it was right to hold the Skevofilax’s responsible for the failure of the case. The first trial said it was, they appealed and the appeal judge supported this appeal and now this summary judgement has reversed the appeal.

However, what I’m really interested in is _why_ the ‘expert witness’ failed to materialise.

James Jeffrey Bradstreet, M.D., was designated to testify to specific causation, i.e., “that significant amounts of mercury to which the minor plaintiff was exposed, including bolus doses received as a result of vaccination, was a substantial factor in causing [Michael’s] current injuries and symptoms,” and further, “that the exposure to toxic levels of mercury within the vaccines [was] a substantial contributing factor to the minor Plaintiff’s ultimate injuries and symptoms.”

But what happened? Why did Bradstreet never testify?

On 26 October 2004, Respondents notified Petitioners, by letter, that “due to unforeseen circumstances [genomic profiling] test results critical to [Dr.] Bradstreet’s opinions” would be delayed up to sixty days. The relevant genomic susceptibility tests assertedly needed for Dr. Bradstreet’s expert medical opinion were being performed by a laboratory at the University of Arkansas. An affidavit completed by Dr. Bradstreet stated that an outbreak of leukemia in New Mexico caused the Arkansas lab ‘s director, Dr. Jill James, to be called out of town to consult on that outbreak, and that she would not be returning for several weeks. Drs. James and Bradstreet previously had collaborated on other projects. According to Dr. Bradstreet, he would be unable to formulate an expert medical opinion regarding causation specific to Michael’s injuries until the results of the genetic test results were received fro m Dr. James’ lab

Who else is rolling their eyes right now? Apparently, these ‘tests’ can only be performed by Jill James lab. And only by Jill James herself (I assume the other employees are useless?). There’s further no evidence to assume that these tests provide evedence of anything anyway and apparently the dog once ate his homework.

So, respondents and plaintiffs argued over a new schedule and a new schedule had to be enforced by the court in the end and Jeff Bradstreet was once again instructed to be made available for deposition, this time on 19 Nov 2005. Subjects at that deposition concerning Bradstreets role as an expert witness would include:

[a]ppropriate topics of inquiry for this deposition, [were to] include, but not be limited to, the nature and purpose of the GST [glutathione-S-transferase, a particular family of enzymes in the human genome] M1 [a particular gene which encodes the GST enzyme] polymorphism [i.e., difference or variation] test, the work that Dr. Brad street [had] performed to date in this action, his qualifications, his affidavit submitted in connection with Plaintiff ‘s Motion for Continuance, all of his opinions on the subject of general causation, and the results of those tests that Dr. Bradstreet [had] performed or directed to be performed and that [were] available as of the date of [the] initial discovery deposition.

In other words, a thorough examination of the man, his qualifications and the quality of his science.

But, the court decided if the results of his tests of unknown origin or efficacy that could only be performed by Jill James at Jill James lab ‘became available’ (snigger) then:

Dr. Bradstreet would be made available for additional discovery by no later than 14 January 2005 in order to explain how those results pertained to his expert opinion regarding specific causation.

And then (gasp!) the court received the following:

Counsel for Respondents informed the Circuit Court and opposing counsel, by letter dated 23 November 2004, that Dr. Bradstreet declined to participate further in the litigation. According to Respondents’ counsel, Dr. Bradstreet withdrew due to outside “professional and personal commitments and time constraints.

According to Bradstreet:

…the primary reason for his withdrawal was the impact the time commitment would have on his ability to spend time with his family.

So either he had no family before the start of proceedings or he forgot he had a family and then remembered or…oh hell, I don’t know…but strangely, Bradstreet was not to busy to speak at The Autism One conference in May 2005, or May 2006, or to attend and speak at a conference of the American Dietetic Assoc in October 2005.

I guess ‘too busy’ depends pretty much on how much money each gig pays and how often difficult questions are asked.

The end result for the Skevofilax’s?

Despite three amended scheduling orders, and approximately 11 months allotted to conduct discovery, Respondents failed to produce an expert who could testify to specific causation within a reason able degree of scientific certainty. Without such an expert, Respondents’ claims must fail as a matter of law.

Bradstreet hung them out to dry and they couldn’t find anyone else prepared to take on causation.

Thanks to A for the file :o) .

Autism extremists

28 Dec

There is a lot wrong with the UK in terms of provision for autistic people and education about what autism is to the mainstream. One of the things that isn’t quite right is the National Autistic Society. It’s numerous flaws include a lack of autistic people at policy making level.

But you know what? It knows this about itself and is trying to change. It is also a deeply responsible society. It carries a link to this PDF on its data pages. This article is a short ‘what is…’ guide that explains clearly what people should look for in a decent science paper and why these things are important. Peer review is discussed, as is the importance of publication in a respected journal. I strongly urge people to download this and pass it on to any parent or interested researcher. Its a great, non-technical, helpful and clear article.

By contrast, the US Autism Society of America (which is obviously in a battle with Autism Speaks as its strapline is ‘the voice of autism’) seems to have taken a step further down the road to quackery. In the latest issue of its ‘Advocate’ magazine, it included a number of interviews with such mercury militia stalwarts as Mady Hornig, JB Handley, Dan Olmsted and Martha Herbert. It also included a ‘how-to recover autistic children’ guide from ARI (home of the DAN! docs). Of note was the trumpeting of a new treatment option I hadn’t seen before:

Medical Marijuana to control aggression…

So if your autistic child is acting up, give ’em an illegal Class C narcotic….is this really the periodical of the most mainstream autism organisation in the USA? Giving space to people who want to push illegal drugs to kids?

I’m not going to pretend I’ve made it through 37 years of life without imbibing the odd narcotic but I was an adult, making my own informed choices. These people are trying to suggest that its OK to give these things to kids. Incredible.

I’ve discovered some of the most informed, considerate and knowledgeable people in the US. I’ve also discovered some of the most frightening, genuinely ignorant (and desirous of that state) people in the US.

Every now and then I can’t hold back from posting to web forums that discuss autism. I did that just before Christmas at a web forum that I’ve now stopped posting at again – it reaches such a fever pitch of idiocy that you think ‘what’s the point?’ And of course, people mail me every so often to point out something dumber than usual that that poster boy for assholery John Best has posted. I stopped reading John’s blog awhile ago for the same reason – the people who post there aren’t interested in debate or enlightenment. They desire their state of ignorance. Well, a quick toke on what DAN! promote those days should help with that!

But anyway, a quick example of one of the more extreme people who post at both these places (I didn’t know until today that this person posts at John’s blog but it wasn’t a surprise) is a poster called ‘dgdavies’ – real name Diane. I find her utterly fascinating and repulsive at the same time.

I found out via her that there is a conspiracy to somehow tie in the vaccine/autism hypothesis to the 11/9 WTC terrorism (which, by the way, was orchestrated by an internal agency according to her). She was, understandably, not clear on the details but she was adamant.

I found out via her that the vaccine/autism hypothesis could well be an Illuminati plot as suggested by FAIR Autism Media wacko David Ayoub.

Her latest fascinating conspiracy theory is that (and this truly is an awe inspiring piece of self delusion) is that the diagnostic criteria for autism was widened at the last DSM revision _in order to ‘hide’ the mercury poisoned hordes_ .

I hear tell, that like John Best himself, Diane doesn’t believe in evolution.

Is this the legacy of Bernie Rimland? A bunch of whacked out stoners swapping addled stories? Pass the hash pipe dude.

There’s also the small matter of at least one ARI DAN doctor being a paedophile, another being very closely associated with a convicted paedophile, DAN doctors belonging to cults like Scientology and, of course, the DAN! hierarchy happy to accept killers. These aren’t conspiracy theories. These are established facts. Why have these people been given any time at all in a supposed mainstream autism publication?

Newer Entries →