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Sunday Solution – No.4 plus update

12 Oct

No PDF to download this week. Instead I want to post my own review after I saw one from Mashable today about the excellent Savvy Auntie website.

As the name suggests Savvy Auntie is a way to keep Aunties (and grandmas, grandads, uncles, cousins, friends – not to mention parents) very firmly in the loop as to what is cool for kids in terms of presents and gifts. You can sort by price, age, colour – even personality!

However, these are not the best bits of the site. the absolute best bits are the Social Web (Web 2.0 for you Old Skoolers) aspects of the site. They have given all users the ability to ask actual parents about the toy in question – quite reassuring. So you as a user can leave reviews, star products, recommend toys for particular sections such as the Special Needs section. There are also forums, blogs etc if you really want to get involved.

Savvy Auntie is basically Amazon for toys/gifts – but an Amazon that is organised, nicely laid out and easy to navigate. Its going to grow so getting in now will reap you dividends.

Now – a minor update. Left Brain/Right Brain has its own Twitter account but now for you radicals who don’t Tweet but do use something else, we’re there too – so if you use Meemi, Pownce, Gozub, Plurk, Identica, Rejaw or Hi5 search for user ‘lbrainrbrain’ and you’ll get our updates too.

Age of Autism use appalling scare tactics

11 Oct

In a recent post, the Age of Autism highlight the death of a baby girl where MMR was found to be a contributing cause. The US government settled with the parents, which is exactly what they should have done. The vaccine was at fault and this child died as a result.

But of course the anti-vaccinationists at AoA can’t leave it at that. They say:

God rest her little soul and comfort her parents, who tried to do right by her and ended up losing her. No, we don’t want to see children dying of preventable childhood diseases, don’t bother us with that canard. We also don’t want to see an ounce of prevention turn into a pound of death.

An ounce of prevention and a pound of death.

Lets establish a few facts shall we? The fact that children are dying right now of vaccine preventable diseases is no canard. Two have died in the UK since 2006 of measles. 345,000 died worldwide of measles in 2005. To belittle and dismiss the deaths of these people – mostly children – as ‘a canard’ is nothing short of evil. Using this little girls deaths to get a cheap shot in at a vaccine that has helped bring about a drop in worldwide deaths from 873,000 in 1999 to 345,000 less than a decade later goes beyond cynical to almost pathological.

What needs to happen for these people to see what it is they are promoting? Should we transport those 345,000 deaths from some dusty locale far, far away to New York? Atlanta? Washington DC? Manchester? Edinburgh? Would it seem real enough then to these soccer moms and weak men desperate to please their Mother Warriors? Would they still be burbling on about an ounce of prevention?

Lets have a look at the VAERS database for 2006. The year Madyson Williams received her MMR shot. According to VAERS there were 22 incidents involving ‘death’ and ‘MMR’. One of these reports stated:

the rpt stated info was recv as “hearsay” through small town grapevine

Another:

The reporter stated “a little girl up the street died after an allergic reaction to MMR.”

Another:

The consumer reported that she “heard of a patient who died after the second MMR shot.”

Another:

Information has been received from a consumer concerning her neighbor’s son who on an unspecified date was vaccinated with a dose of MMR II (Enders-Edmonston, Jeryl Lynn, Wistar RA 27/3). On an unspecified date, post vaccination, the patient developed autism and eventually jumped in a lake and died…….The reporter refused to provide information beyond what was on the VAERS form . The reporter refused to provide the name and telephone number of the actual parents of the child.

There is a type of person who seems to feel it necessary to make everything – everything – about them. I hate vaccines therefore ‘my neighbours son’ died of them. I hate vaccines therefore ‘a little girl up the street’ died from them. the AoA article shows exactly the same casual disregard for human life in pursuance of their agenda. Disgusting and immoral.

ScienceBlogs Book Club

1 Oct

I was very honoured to be asked to participate in the latest round of the ScienceBlogs Book Club.

ScienceBlogs Book Club

ScienceBlogs Book Club

The ScienceBlogs Book Club is exactly as it sounds – a discussion round table on a particular science related book. In this instance, the book in question is Dr Paul Offit’s Autism’s False Prophets.

This promises to be a very interesting discussion, mostly because numbered amongst the contributors is Dr. Offit himself. The full line up of contributors is:

Dr. Offit
Kristina
Orac
Professor Bob Park
and me.

A rather intimidating line up in which to ply my blogging wares. Everyone except me is either a Doctor or a Professor. It does feel a little like being made to sit outside the Headmasters office (again).

All joking aside, it really is an honour to be asked to blog alongside such heavy hitters (even if I do know two of the bloggers pretty well) and I hope to be making sure I am talking as much about autism and the future of autism research as I am vaccines. I think Dr. Offit – given his final chapter – will approve of that.

So – come across and participate. I’d like to see UK-ers over there too if possible (Rutty, I’m thinking of you šŸ˜‰ ).

Sunday Solutions – No. 2

28 Sep

Social Stories are short descriptions of very particular situations. Some autistic people find them very useful for grasping new situations, as strategies and as tools to assist in learning key skills.

We have learnt with my autistic child that the ‘traditional’ social story is useful but not quite enough. Xe responds better when there is a definite and concrete sensory link to what is being said. For example, when xe started pre-school, we took pictures of the staff that would be there and constructed social stories around who these people were and what xe could expect of them.

Taking that one step further is the idea of constructing mini-presentations as social stories. I have been experimenting with these for 4 or 5 months so far and whilst I have yet to find a perfect balance, they are an upgrade from static pictures.

This tutorial shows you how to use the free online tool Empressr to build truly interactive social stories. For autistic people like my child who are very IT literate, being able to click through as many times as xe likes seems to help. You can also build them with video, audio etc as well as just pictures and text.

I hope this weeks Sunday Solution is of some help.

Salon – Inside the vaccine scare

22 Sep

Salon redeems itself from producing what Orac at the time called biggest, steamingest, drippiest turd ever dropped on the web.

Three years ago Salon published the notoriously innacurate ramblings of RFK Jr. After uproar in the web science community and numerous fixes and amends to the original piece, what was left was still an awful piece of credulous rubbish.

It seems that Salon learnt their lesson. This time, they have ensured that the person talking about vaccines and autism is a _scientist_ as oppose to a crowd-pleasing politician.

Rahul Parikh has published a review of Paul Offit’s Autism’s False Prophets which differs so wildly from the RFK Jr debacle that its almost impossible to think of them being in the same publication.

I don’t want to do a review of a review as that would be bizarre and unnecessary but Parikh makes some key points that I want to address. The first one is the way the book starts.

Early in Dr. Paul A. Offit’s new book, “Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure,” he describes a threatening letter he received from a man in Seattle. “I will hang you by you neck until you are dead!” it read. The FBI deemed the threat credible, assigning Offit a protective officer who, for the next few months, followed him “to and from lunch, a gun hanging at his side.” He then recalls a suspicious phone call from a man who recited the names of Offit’s two children and where they went to school: “His implication was clear. He knew where my children went to school. The he hung up.” These days, the hospital he works in regularly screens his mail for suspicious packages.

Such stories usually come from pro-choice physicians on the front lines of the abortion debate. But Offit is no obstetrician. Rather, he is a baby doctor — the chief of pediatric infectious diseases at the Children’s Hospital of Philadelphia. The threats against him and his family have come not from antiabortion advocates, but rather from anti-vaccine crusaders who believe that vaccines cause autism. Offit, it turns out, has been targeted by them because he helped to develop a vaccine that prevents rotavirus, a serious gastrointestinal infection in children, and because he has been staunchly pro-vaccine in a time when there are many doubts about their safety.

It is amazing that we should be in a situation where a doctor who is actively saving lives is being targeted for that very fact. What is even more amazing is the fact that the very antivaxers who hate Offit so much simply don’t believe he _is_ being targeted. A few comments from Lisa Jo Rudy’s piece on Offit’s book illustrate this perfectly:

It’s very hard to judge the seriousness claims like Offit’s….

Mark Blaxill, Safe Minds.

I have heard Dr. Offitt make his claims of threats, etc. on more than one occasion. But I have never seen any real evidence of those alleged threats.

Wade Rankin, autism/antivax blogger

I would suggest that a reference to the possibility that some agency or company would harm one’s children in the future could be construed and repeated as a ā€œthreatā€ to one’s children if that threat would help to garner sympathy and label an opposing side as nuts.

Mike B

An amazing reaction. They genuinely hate Paul Offit so much that they think he is making up threats made to his children. And they think he’s doing it to ‘garner sympathy and label an opposing side as nuts’. This is the type of denial and refusal to see their own shortcomings that has led to the sorry state of autism/vaccine science in the first place.

Parikh also documents the reality of the science today and the reality of how the wider world views the autism/anti-vaccine community.

Despite what Wakefield claimed in his paper, his hospital’s ethics committee never approved his experiments to put children to sleep under general anesthesia, do spinal taps on them, take biopsies of their intestines (one of the children was hospitalized after his colon perforated in several places) and take volumes of blood from their veins. Deer also discovered serious conflicts of interest: Wakefield’s research was secretly bankrolled by a personal injury lawyer whose clients were suing MMR makers. Wakefield himself was given close to a million dollars to prove that the MMR caused autism. He had filed a patent for a new MMR vaccine at the same time he was doing his research. Upon learning this, Lancet retracted his paper, and he was charged with professional misconduct in 2005. If he is found guilty of misconduct, he will never practice medicine in the U.K. again.

The people in the autism/anti-vaccine community see Wakefield as a persecuted hero. Everyone else in the entire world who takes an interest in the matter sees him as a weak man who tried to game people – and did. Possibly he still is.

This level of disconnect between what those in the autism/antivax community see as the reality and the _actual_ reality is sometimes shocking. Even for me who has been in the front line of this debate for five years now, some of the things I read about and see from these people make my jaw drop.

I blogged about an example of this not long ago when Safe Minds Board Member Heidi Roger stated that Polio could be preferable to autism – and even that death could be better than autism.

This is a sadly far from uncommon opinion amongst a certain type of autism/antivax believer. To sum up their personality type would, I think, bring a sizeable minority of them very close to Munchausen syndrome by proxy/ Fabricated or induced illness , the indications of which seem very familiar to me from reading the Yahoo groups over the last few years:

* A child who has one or more medical problems that do not respond to treatment or that follow an unusual course that is persistent, puzzling and unexplained.
* Physical or laboratory findings that are highly unusual, discrepant with history, or physically or clinically impossible.
* A parent who appears to be medically knowledgeable and/or fascinated with medical details and hospital gossip, appears to enjoy the hospital environment, and expresses interest in the details of other patients’ problems.
* A highly attentive parent who is reluctant to leave their child’s side and who themselves seem to require constant attention.
* A parent who appears to be unusually calm in the face of serious difficulties in their child’s medical course while being highly supportive and encouraging of the physician, or one who is angry, devalues staff, and demands further intervention, more procedures, second opinions, and transfers to other, more sophisticated, facilities.
* The suspected parent may work in the health care field themselves or profess interest in a health-related job.
* The signs and symptoms of a child’s illness do not occur in the parent’s absence (hospitalization and careful monitoring may be necessary to establish this causal relationship).
* A family history of similar or unexplained illness or death in a sibling.
* A parent with symptoms similar to their child’s own medical problems or an illness history that itself is puzzling and unusual.
* A suspected emotionally distant relationship between parents; the spouse often fails to visit the patient and has little contact with physicians even when the child is hospitalized with serious illness.
* A parent who reports dramatic, negative events, such as house fires, burglaries, or car accidents, that affect them and their family while their child is undergoing treatment.
* A parent who seems to have an insatiable need for adulation or who makes self-serving efforts for public acknowledgment of their abilities.

I might catch some flak for making this comparison but whilst I am not suggesting that everyone autism/antivax adherent is MSbP or FII, I do think – as I say – a sizeable minority are. In the list above I have emboldened the characteristics I personally have seen lots of evidence of.

At any rate, whether there is genuine evidence of MSbP or FII or not, there is definitely an ongoing unreality to a certain group of peoples lives with autism. Why? To pretend to themselves they have total control over something that they do not understand? To medicalise something in order to keep alive the hope of a medical cure? To fuel their pre-existing lust for conspiracy theories? All of the above? None? Something else?

It gets to a point when it starts to not matter. When autistic children are literally being experimented on with absolutely no control in place like they are being with chelation, like they are being with Lupron and like they now are being with OSR we have to do something. When children in the UK are dying of vaccine preventable disease and children in the US are being hospitalised then we need to do something.

Paul Offit did something.

Sunday Solutions – No. 1

21 Sep

And now for something completely different.

I’m introducing ‘Sunday Solutions’ as a total change of pace from the usual material on the blog.

The Sunday Solutions will be an ongoing series in which I’ll introduce parents and other interested users into some technological solutions that can help address some of the key worries parents have about their kids using a computer or the internet, especially their autistic kids who can be very vulnerable to certain people and/or scenarios.

For this first Sunday Solution, I’ve shown people how easy it is to use the Firefox web browser to control what content is available to their kids. I (and I assume you) don’t want to stop your kids using key websites like YouTube etc but you don’t want them exposed to some less than savoury elements of it. Using this first Sunday Solution you will be able to retain total control over what your children can and can’t see.

You can download the PDF to read at your leisure.

Hope you find it useful. Don’t forget to @follow Left Brain/Right Brain on Twitter for further announcements and please – if you find this of any use, please pass it on to a friend and vote for LB/RB in the Bloggers Choice Awards!

The Autism Hub stretches its wings some more

18 Sep

Mike from Action for Autism is heading down to London for the NAS International Autism Conference on behalf of the Hub tomorrow.

This continues the great work Steve started back in the winter of 2007/08 and carried through during the early part of this summer at USD.

I am utterly thrilled to see the Hub gaining such prominence amongst the scientific elite of American society and the group I feel is the most ‘ND’ friendly in the world – the UK’s National Autistic Society. It really does feel like the right people are listening to Hub members and so the right message is gaining prominence.

Mike’s presentation introduces the Hub to the NAS audience and goes through the history of how the web has traditionally been used in autism advocacy and how the Hub tries to redress the imbalance.

I have been tangentially involved in Mike’s preparations in my role as a designer but I would have loved to have been able to stand alongside Mike at the conference and showcase the Hub. One day.

The future of the Hub is very, very bright. All Hub members are involved in discussing how to take the Hub forward and what should be next. Dave and HJ are managing what is a very fluid process and I am really excited to be part of that team of dynamic and forward thinking individuals.

Go Hub!!

LB/RB and Neurodiversity.com nominated

12 Sep

We’ve both been nominated (by me, hehe) for some blog awards. They might sound trivial but unlike a lot of blog awards that seem to circulate almost daily, these carry some weight.

This blog has been nominated in the ‘Health’ category – Please vote for us if you have enjoyed or found anything useful on LB/RB over the past year. Annoyingly, it seems you have to register to vote, but please make the effort as it will help us reach new people.

Kathleen’s now (in?)famous blog has been nominated in two sections. ‘The Blogitzer – which is the blogging equivalent of the Pulitzer and Best Blog of all time, both categories it fully deserves to win in.

So – please support both of us in our efforts. Thanks!

Do you Tweet?

11 Sep

If you just asked yourself ‘Tweet? What the hell is he talking about’? then you may not. If you know exactly what I mean then this is for you šŸ™‚

Left Brain/Right Brain now has a Twitter account which some of the authors that blog on LB/RB have access to and which will be used to post updates to the site, notify people of new LB/RB blog posts, notify people of interesting sites/stories we’ve found and want to share with you.

For those who aren’t familiar with Twitter, its what is known as micro-blogging. A user has 140 characters in which to make a post. I have my own personal Twitter account but I wanted to make a dedicated LB/RB account for the purposes described above.

You can track Twitter accounts by becoming a ‘follower’ (you can see the people I ‘follow’ at the bottom right column of my Twitter home page) and subscribing to the dedicated RSS feed or by checking the Home page every so often – or by using a desktop solution such as Twhirl, or via a Firefox extension like TwitKit. Obviously, you need to join Twitter in order to either follow others tweets (a message posted to Twitter is called a tweet) or post tweets yourself.

So, join up, or start following LB/RB!

Arthur Allen – vaccine skeptics vs your kids

11 Sep

Whilst, I’m not sure that the people Arthur is writing about are skeptics as I understand the term (having a scientifically valid basis for not accepting an argument or position), I know what he means. And he’s right that it is this group of people vs the health of people everywhere.

The sub-header is even more accurate ‘immune to reason’. One only has to take a look over at the recent rantings on a certain blog we all know about where the latest themes are:

1) Presidential candidate Barack Obama is now a big pharma shill because he told one of them: “I am not for selective vaccination, I believe that it will bring back deadly diseases, like polio.”.

2) The latest study in a long line of studies that show once more there is no link between MMR and autism is both flawed and exonerates one of their heroes.

3) Kathleen Seidel is wrong because….uh….well, no one knows why but she must be. Apparently.

Immune to reason indeed.

As Arthur points out, there is a great deal at stake:

…in the last trimester of her pregnancy, Helena Moran caught a cough that she couldn’t get rid of. She figured she’d picked up the germ—whatever it was—from one of her patients at a Boulder dentist’s office. But the real nightmare began after her daughter, Evelina, was born: The baby began to cough and cough, and then she’d curl up in a little ball and turn blue. At the emergency room, she was diagnosed with whooping cough. She spent the next five weeks in intensive care and suffered permanent lung damage.

Now, this isn’t *all* the fault of the so-called autism community, but as I’ve discussed before, I’m ashamed to say that a lot of it is.

….the movement got a huge boost from the controversy over the mercury-laden preservative thimerosal, which some theorized might be linked to autism. That link has been disproven—by, if nothing else, the fact that autism rates remained steady after pediatricians and public health authorities told manufacturers to stop making thimerosal-containing childhood vaccines in 1999. But the anti-vaccine movement has kept going, finding ever new reasons to distrust immunization.

The are a lot of zealots out there who have fed upon the autism community. A parent who might not believe vaccines case autism listens to horror stories and reads links sent to them from such places of quackery as whale.to who are nothing to do with the autism community but who market their own brand of ridiculousness (the owner of whale.to believes dolphins can manipulate gravity and has the pictures to prove it!) regarding vaccines and the autism parent greedily sucks it down.

Arthur discuss the practice of abusing ‘religious exemption’ by these people:

Right now, in many states, all it takes to get an exemption from vaccine requirements is signing a form. Some, including a group of doctors at Johns Hopkins University, have proposed making it harder—allowing a philosophical exemption only after parents demonstrate a good-faith effort to educate themselves.

But an article I read in yesterdays ‘Edmond Sun’ stated:

….a person “who has reached the age of majority and is mentally competent to do so may justifiably refuse immunizations for himself or herself, but may not impose this refusal on a child, who has no choice in the matter.” Courts have consistently upheld this principle.

That makes sense to me. Who would want to refuse such a simple thing that has no link of any kind to autism?

Arthur closes with the following:

But while questioning authority is healthy, facts are facts. If vaccines really were responsible for autism, it would be too much to ask parents to do the altruistic thing. But more than a dozen studies have failed to discover such a link—and not a single legitimate study has shown that one exists.

He’s spot on. All the celebs and all the money in the world cannot change that simple fact. We need to get past this. Those who believe autism is caused by vaccines need to put up or shut up. They are holding up progress on autism research and causing the health of our societies to suffer.

I urge readers to visit Arthur’s piece and read the comments. The first few demonstrate exactly the sort of mindset Arthur is talking about – the one’s who bring shame on the autism community. They truly are immune to reason.