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I am Bonnie Offit!!

16 Nov

AoA have a hilariouslybizarre post up this morning.

Is Dr. Bonnie Offit masquerading on the web as an autism parent and prolific blogger named “Sullivan”?

And why do AoA think this?

The primary answer seems to be that they found a comment from Liz Ditz on Squidalicious blog that _seems_ (if you’re not too bothered about reading the context) to refer to Sullivan as ‘her’. In fact what Liz was doing was referring to the subject of the post she was commenting on – Holly Robinson Peete.

AoA’s next piece of evidence is that Bonnie Offit surfs the blogosphere late at night. Erm…so what?

Their third piece of evidence seems to be that Sullivan is a smart guy. This is undeniable. I’ve had the good fortune to chat to him via Skype and he is indeed one smart cookie. Is he a doctor of medicine as Bonnie Offit is? No. No he’s not.

Their fourth piece of evidence is that Sully defends Paul Offit. Well so what? I know of lots of bloggers, including myself, who defend Paul Offit.

Their fifth piece of evidence (why does this remind me of ploughing through Age of Autism the book) is that Sullivan appears to know Paul Offit. Again, so what? I’ll be frank, I’ve swapped emails with Paul Offit and charming man that he is, he’s always very friendly and courteous , going out of his way to be helpful and guess what – he gives proof copies of his books to people he think would be interested in reading them!! I have one myself. Dan Olmsted, Mark Blaxill et al also indulge in this practice. That takes care of another piece of ‘evidence’.

Yet another piece of evidence produced by AoA is that Sully goes to great lengths to clarify what Paul Offit earned from his vaccines. Let me give you a little lesson AoA – this is something called ‘clarity’ and it is coupled with something called ‘tenacity’. When you have these things, as Sullivan does, you are interested in the actual truth as opposed to the surface appearance.

Yet another piece of evidence (and we’re really scraping the barrel here) is that Sully didn’t discuss the suit against Paul Offit until the day it was dismissed, despite the fact that Orac had. Not really sure what to say about that one, except this is getting very silly indeed.

AoA closes this piece of hilarity with:

You know, I’m starting to hope this is Bonnie Offit, because if it isn’t we have one really, really troubled father on our hands. Get a life, father of a child with autism, Paul Offit is not going to help your child…unless Paul Offit is the father of your children, and then, once again, it all makes sense.

Which is a weird statement to make given that the author of this whole piece, JB Handley, said in an email to Sullivan:

…you are entitled to your own opinion, and I find your writing to be thought-provoking.

So on one hand Sully is a really, really troubled father and on the other JB Handley finds Sully thought provoking. Hmmm.

However, as I said, its plain to me that Sullivan is not Bonnie Offit for one clear and simple reason. I’ve spoke with HIM.

And there’s one other factoid AoA clearly missed. Sully can’t be Bonnie Offit because I am!!

Update:Orac claims he’s Bonnie Offit. Clearly this can’t be true because I AM!!!

Is there a point to blogging Age of Autism – the book?

18 Oct

Recently Sully asked if there was value in continuing to report of a certain AJ Wakefield’s exploits. It got me to thinking – is there continuing value on blogging Age of Autism, the book?

The most recent chapters have descended into very very familiar territory with the Somali and Amish episodes being regurgitated to seemingly little or no point. Are LB/RB readers of the opinion that this sort of material requires review?

Don’t get me wrong, I would continue to blog about _new_ material in the book but as I have come to the section of the book where phrases like:

The obvious risk that immigrants to any Western country face is over-vaccination.

Page 250

are tossed around without any reason or evidence to back up the implication that ‘over’-vaccination is dangerous, or indeed there is such a things as ‘over-vaccination’, then I begin to question the worth of this material to LB/RB readers.

What do you think Dear Reader?

A look back on autism blogging

6 Oct

A post on Autism Street is entitled “Epilogue“. In it, Do’C gives a look backwards on his experiences online in the past few years. Autism Street was one of my mainstays when I first started reading blogs. Before reading autism blogs I had almost no exposure to blogs. I can’t recall how exactly I got into reading blogs but I recall some of the ones I read.

Obviously, I’ve read Kev’s blogging for some time. I was reading when the domain name was under his name and not LeftBrainRightBrain. I met Do’C once and he asked me how I used to find the blogs to read. I told him that I would take some of the sites with long blog rolls (LBRB being one, Neurodiversity.com being another) and would just go down the blog roll, reading whatever was new on each blog.

A lot of the blogs I’ve read have either stopped or slowed down. A lot of them I don’t remember. But here are some of them.

AutismDiva. The Diva has retired. For those who keep speculating, yes, she is retired and not morphed into some other online persona. The Diva was a persona, not the personality of the actual blogger. The Diva had an amazing wit, and it bothered many who were the target. I think it sometimes masked the fact that the Diva cared a lot about autistic people. The Diva gave me some of the best advice I got as a blogger. One piece was that bloggers should give themselves permission to stop.

I find it very strange that it has been three years since the last Diva post.

Asperger Square 8. A different brand of humor than the Diva, but amazing humor at the same time. Again, the real message was under the humor. Square 8 is not very active these days and I miss that very much.

I recall when Kev first blogged about a Autism News Beat. This is not a high-quantity blog, but again a sharp wit and some amazing pieces. ANB works from a journalist’s perspective. He has attended alt-medicine conferences and reported on them.

A Photon in the Darkness blog is and has been a great resource. Prometheus has been blogging since 2005. Prometheus has an a level of scientific expertise which is rare in blogging. Not absent, but rare.

No blogger is as thorough as Kathleen Seidel at Neurodiversity.com. Her series on the Geier’s revealed questionable institutional review boards, questionable therapies, well, lots of questions about the Geiers. Lots of answers too. Those answers prompted a subpoena from a vaccine-injury lawyer who often hires the Geier team. A subpoena which was quashed, but not until after it made nationwide news.

The Autism Natural Variation blog is and has been one of my favorites. There was a time when every three months the California Department of Developmental Services would put out new statistics. David Kirby and Rick Rollens would immediately use those statistics to claim that vaccines cause autism, and Joseph and Do’C would desconsruct the spin. I recall one time when Mr. Kirby and Mr. Rollens couldn’t agree. One claimed that the autism count went down, one claimed that the count went up. Both claimed this as proof that vaccines cause autism. Joseph and Do’C were always there and always solid with responses.

I could go on and on. There have been so many really good blogs. The ones above are just the few that came readily to mind. What strikes me is that the ones that did come readily to mind are blogs which have largely dropped off in output over time.

What is very interesting at this time is the reformulation of the Autism Hub. Many of the older blogs, some very good newer ones. One new one that caught my eye is Corina Becker’s “No Stereotypes Here” and another “new” blog is Kristina Chew’s “We go with him“. Krisina Chew amazed me with her prolific blogging in her old blog.

The above are just observations and memories, not a list of “top” blogs or anything of that sort. Just a few of those which stand out in my memory today. Tomorrow the list may be different.

Donald Triplett – Autism’s Patient Zero

27 Sep

Donald Triplett is (for he is still alive) Kanner’s Case 1. Recently the story in a lovely portrait in The Atlantic, Donald has also had the sad misfortune to slowly but inexorably become a poster child for the autism/anti-vaccine movement. As one of the leading autism/anti-vaccine proponents, Ginger Taylor, writes:

While Kanner’s other cases had poor outcomes, Donald did not. It turns out Donald received a medical treatment that Kanner never recorded when, as a boy, he fell victim to crippling juvenile arthritis. Donald was treated with gold salts and his brother reported that as a result, Donald not only recovered from the arthritis, but “the proclivity to excitability and extreme nervousness had all but cleared up.”

Donald began to recover from “autism.”

This is highly relevant to the autism debate because gold has an extreme affinity for mercury and pulls it from the body. It is also significant because arthritis links his “nervous disorder” to his autoimmune disorder. It is historical evidence that the claims that parents have been making, that their children with autism had regressed after their mercury-containing vaccines, and that treating them for their autoimmune symptoms makes their “autism” better.

Sigh. And so we see the same old merry-go-round that has engulfed Hannah Poling – a determination to see one end and one end only for causing autism – vaccines.

And yet…theres no evidence Donald Triplett was ever vaccinated with anything. Certainly not thiomersal. Indeed, those who ‘discovered’ that Donald was treated with gold salts – Messers Blaxill and Olmsted, had to find another method of Donald being exposed to mercury. They claim that Donald:

…lived in an area where a water-soluble form of mercury was first used in forestry.

Bit of a stretch much?

There are a few reasons I really think this is debatable at best.

1) Why was Donald Triplett the _only_ person in Forest, Mississippi to ‘get’ autism from pesticides used in Forestry?

2) The only person who has suggested Gold Salts could theoretically chelate mercury is one Boyd Haley. In fact as Prometheus said way back in 2005:

The gold used to treat Donald T’s RA was a salt – the gold was an ion and not able to amalgamate with metallic mercury. In addition, mercury in animal tissue is also either ionized or chemically bonded with organic groups (e.g. methyl, ethyl, phenyl…) and also not able to form an amalgam.

3) Lets say that the gold salts performed the impossible and chelated the mercury. Why didn’t Donald Triplett simply ‘get’ autism straight away since mercury continued to be used in the Forestry industry? Chelation is not a preventative.

So here is this young boy who’s exposure to water soluble mercury seems in extreme doubt to me, who’s vaccination record seems to be zero but who was also autistic.

I’m afraid that only points one way to me.

Sharyl Attkisson blogs the Hannah Poling settlement

10 Sep

I had forgotten Sharyl Attkisson. She is a reporter for CBS news who has covered vaccines in the past, but has been silent on the issue for the past year or more.

Her recent piece shows exactly the sort of reporting that frustrated me in the past: Family to Receive $1.5M in First-Ever Vaccine-Autism Court Award

In that piece she links to her piece from 2008 on the Hannah Poling case: Vaccine Case: An Exception Or A Precedent?

Here’s a quote from that earlier piece:

While the Poling case is the first of its kind to become public, a CBS News investigation uncovered at least nine other cases as far back as 1990, where records show the court ordered the government compensated families whose children developed autism or autistic-like symptoms in children including toddlers who had been called “very smart” and “impressed” doctors with their “intelligence and curiosity” … until their vaccinations.

They were children just like Hannah Poling.

What’s still being debated is whether the Poling case is an exception … or a precedent.

So, which is it? Were there children “just like Hannah Poling” or is this the “First-Ever Vaccine-Autism Court Award”?

Actually, it is neither. This isn’t the first vaccine court award involving autism, and the other cases are not “just like Hannah Poling”.

For real information on the other nine cases, read Kathleen Seidel’s piece on Neurodiversity.com. Few, professional or amateur, can compare the the thoroughness of Kathleen Seidel. For example, one case (the first I read involving autism from the vaccine court) is Suel v. HHS. Young David Suel had tuberous sclerosis, a condition known to be associated with autism and epilepsy. Epilepsy occurs in about 60 to 90% of individuals with TS. Autism occurs in about 25-50%. David Suel’s case was declared to be a “table injury” wherein the seizures began within a set period after his DPT vaccination. What is notable about that is the table for DPT was later changed–when it was shown that DPT was not responsible for inducing seizure disorders. In other words, had David Suel been vaccinated, or just filed, after the change in the table, he likely would not have been awarded damages.

“They were children just like Hannah Poling”? Is tuberous sclerosis just like mitochondrial disease? (answer: not even close).

Shall we go on? In her recent piece, Ms. Attkisson states:

In 2002, Hannah’s parents filed an autism claim in federal vaccine court. Five years later, the government settled the case before trial and had it sealed

Not accurate. The court did not “settle” the case in 2007. They conceded the case, and they were in the process of completing the settlement when someone leaked the information to the press. The government did not “seal” the case–it is standard procedure to keep this information confidential until the settlement is completed.

But that doesn’t make a good story, does it?

Ms. Attkisson goes on:

In acknowledging Hannah’s injuries, the government said vaccines aggravated an unknown mitochondrial disorder Hannah had which didn’t “cause” her autism, but “resulted” in it. It’s unknown how many other children have similar undiagnosed mitochondrial disorder. All other autism “test cases” have been defeated at trial. Approximately 4,800 are awaiting disposition in federal vaccine court.

Mito-autism was a big thing for a while there. David Kirby took the story and ran with it–making a lot of mistakes along the way and propagating a lot of misinformation. It is unknown how many other children have similar disorders–but the researchers who studied cases like Hannah Poling have stated that cases such as hers are “rare”.

“All other autism “test cases” have been defeated at trial”.

What is conspicuous about the other “test cases” is that in none of them was it argued that the children were like Hannah Poling–i.e. the attorneys did not argue that a mechanism of autism through mitochondrial dysfunction aggravated by vaccines existed. In fact, one child named as a test case was pulled from that slot in order to argue that mitochondrial based case. The expert report filed for that child (since pulled from the Omnibus website) did not argue mitochondrial disorder or dysfunction at that time. In other words, the idea of a mitochondrial disorder being linked to autism was so alien from the cases being made by the attorneys for the families in the Omnibus that this child had to argue the case separately.

It is often pointed out that many autistics may have mitochondrial dysfunction. This is based largely on studies out of Portugal. It is left implied, and it is often believed that mitochondrial dysfunction means vaccine injury in these cases. This was the impression that David Kirby put forth and it was clearly wrong. First, mitochondrial disorders are a very broad spectrum. The type that Hannah Poling has is not the same as those detected in most autistics. Second, most reports of mitochondrial disorders and autism, including the Portugal studies, do not involve regression. Third, even amongst those children reported by the groups that identified Hannah Poling, regression was often idiopathic or followed fever clearly independent of vaccination.

I do not expect Ms. Attkisson to present the following (quality) information, so I will repeat it here:

Here are the answers to some questions posted to mitochondrial medicine experts and their answers:

When asked, to respond to the position: ‘‘I view the risk of vaccination in known metabolic disease patients to generally be outweighed by the risk of the infectious diseases being vaccinated against”

63.2% strongly agreed
31.1% agreed
0.9% disagreed
and 0.9% strongly disagreed.

Asked about the opinion that the risk of vaccination in metabolic disease was ‘‘greater than the risk of the infectious diseases being vaccinated against”

52.9% strongly disagreed
40% disagreed
3.5% agreed
and none strongly agreed

A reminder for neurodiversity

2 Sep

Its been awhile since I blogged about neurodiversity and why it matters to me as a concept. Two recent events in my own life has made me more aware of that than usual.

In the first event, which concerns me directly, I have had to have a change in the medication I take that helps me regulate the manic depression (bipolar) I am diagnosed with. Nobody knows why I need to adjust my medication, only that it needs adjusting and so I shall shortly have Lamotrigine added to the medication regime I have to take.

How does that remind me about neurodiversity? It reminds me that the basic tenets of neurodiversity – respect for the individual differences those with different neurological makeups have – are my best way of being able to move forward in this world. More on this later.

In the second event, which occurred to some of my new family two days ago, myself, my partner and her two daughters – of whom the eldest (she is 4) is autistic – were shopping. Lily began to have a meltdown, a not unknown event in supermarkets for her and one for which we have a carefully worked out strategy. However, this time our strategy was rudely interrupted when a young woman began to shake her head, gawp openly at Lily and make tutting noises. She obviously felt Lily was a naughty child, rather than an autie child.

My partner and I decided that we had had enough of people judging Lily and so remonstrated with this woman. We both explained that Lily was autistic and unable at the age of four to regulate herself in high impact environments but we had to eat and anyway why should we exclude Lily from coming out with us as a family?

The woman waved her hand at us both in a casual dismissal and said we weren’t ‘controlling’ her properly. I smiled through gritted teeth and asked her what she knew about autism. She refused to answer. I asked her again and she walked off with another casual wave of dismissal. My partner’s by now angry shout of ‘shes autistic and a little girl, she can’t help herself’ following her down the aisle.

Of course, this isn’t the first time either one of us have been exposed to such ignorance and I doubt it will be the last. I’m also sure that many parents and autistic people reading this will be familiar with ‘the look’ that can come from such ignorant people who believe they have a divine right to judge others. But it again reminded me of neurodiversity and why I believe in its most basic tenet.

My partner said to me later that what had upset her so much was that Lily (and you can substitute her name for your own or your child’s) would be – to a certain degree either a lot or some – be dependant on the good will of society as she grew up.

People like the woman in Sainsburys are the ‘anti-neurodiversity’. They believe we can and should judge immediately, based on no other evidence than what we see and hear right in front of us. To me, neurodiversity should sit and think, consider the possibilities and act accordingly, based on a desire to help society in the belief that society should do the same for us.

By specifying a desire to include those with differing neurological disorders/disabilities/differences, neurodiversity helps me to feel secure in the world. It also means that I can feel secure in the world my children will inherit.

Quick Q&A with APC study lead author

26 Aug

I recently blogged about a study that linked APC dysfunction with autism and learning disability. Two questions interested me so I wrote to lead author Michele Jacob to ask them.

Hi Dr Jacob,

My name is Kevin Leitch, I own and edit a popular blog on autism and am also father to an autistic daughter.

I found your recent study very interesting and had questions that I’d like to ask you and hopefully you’d give me permission to discuss your answer on the blog?

My questions are –

1) is there any set of circumstance in which APC dysfunction can occur ‘in the wild’ e.g. could a child be given something that then ‘turned’ them into an autistic person by negatively affecting APC function?

2) If there *is* , is there a way that this dysfunction might be reversed or at least modified somewhat?

My own take on this is that the answer to both questions would be ‘no’ but I have no understanding of APC function and a laymans understanding of genes in general.

Many thanks in advance for both your fascinating study and any time you can offer me in answering my questions.

She responded:

Hi Kevin,

Thanks for discussing our work in your blog. I am delighted our work interests you.

I think the short answer to both questions is no. The only way to cause APC dysfunction is via gene mutations. It’s function can be modified, enhanced or reduced, by signaling events in cells, but these changes are not large enough to have effects on behavior.

Loss of function mutations in the APC gene are inherited or occur sporadically. The symptoms associated with the sporadic mutations will depend on the cell type. APC is present in all cells of the body and it has several functions that are critical at different stages of development.

My lab is continuing to define the role of APC in the nervous system. Our goal is to define changes caused by APC dysfunction that lead to learning deficits and autistic-like behaviors.

Hope this information clears up your questions.

My best regards to you and your daughter.

So why did I ask these questions? Well, its been my experience that the antivax crowd leap on any science that seems to have an outcome that is linked to autism, to either trash it or link vaccines to it. I’m hoping Dr Jacob’s answers lead away from the possibility of linking autism to vaccines via APC dysfunction.

LBRB on Facebook

22 Aug

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)

Disturbances in certain genes play a role in autism

19 Aug

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.

Autism is not murderous

12 Aug

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.

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