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AAP needs help of rational parents

18 Feb

As part of the welcome addressing of the needs and concerns of the real autism and autistic community in regards to science and as part of their efforts to address the pseudo-science and quackery of the anti-vaccine agenda of certain autism related groups, the AAP are looking for rational parents to help them. I will certainly be offering my details should they be of service and I would urge any parent of an autistic child who is sick of hearing the unscientific and self serving agenda of such groups – groups who not only belittle autistic people but also gladly and readily place the health and well being of others at risk for absolutely no purpose to contact the AAP to offer their details also.

If you wish me to pass on your details, please either leave your name and email address in the comment section of this post, or email them to me or you can email the author of the AAP letter reproduced below.

Hello,

As part of our ongoing response to media stories regarding autism and vaccines, the AAP communications department is compiling a list of parents who support the AAP and are available for interviews. We are looking for two types of parents who could serve as spokespersons:

Parents of children with autism spectrum disorders who support immunization and who do not believe there is any link between their child’s vaccines and his or her autism.

Parents of children who suffered a vaccine-preventable illness. This could be a parent who declined immunization, whose child became ill before a vaccine was available, or whose child was ineligible for immunization.

We are asking for your help identifying parents who would be good spokespersons. They do not need to be expert public speakers. They just need to be open with their story and interested in speaking out on the issue. We will contact candidates in advance to conduct pre-interviews, to offer guidance on talking to reporters and to obtain a signed waiver giving us permission to release their name.

If a parent were placed on our list, we would offer their name and contact information to select media. We hope to build a list of parents from a wide range of geographical areas.

As the Jenny McCarthy and “Eli Stone” stories illustrate, this issue is likely to recur in the national and local media. The AAP is committed to doing all we can to counter such erroneous reports with factual information supported by scientific evidence and AAP recommendations.

The anti-vaccine groups often have emotional family stories on their side. The ability to offer a reporter an interview with a similarly compelling parent who is sympathetic to the AAP’s goals is a powerful tool for our media relations program.

Please contact me if you have any questions or to suggest a parent to interview.

Thank you,

Susan Stevens Martin
Director, Division of Media Relations
American Academy of Pediatrics

Lets take the example of just one worldwide disease that is vaccine preventable. Measles. In Jan 2007 The Guardian reported:

Between 1999 and 2005, there was a 60% reduction in annual measles deaths worldwide, from 873,000 to 345,000….

Fantastic news. But let that figure of 345,000 stay in your mind. That was how many people died all over the world from measles in 2005.

What do the countries most affected by measles think?

Urbain Olanguena Awono, Cameroon’s public health minister, described the fall in deaths as a spectacular achievement. “We are winning the fight against measles, which has long killed, sickened and disabled our children,” he said. “Our determination is stronger than ever to make measles history by further strengthening our measles control activities, working in concert with our international partners and setting aside resources.”

And who form part of their international partners I wonder? Merck? Wyeth? Bayer? SafeMinds? TACA?

There is even cautious talk of the possibility of ridding the world of measles, but while the eradication of smallpox was a triumph, the long struggle to eliminate the final reservoirs of polio in a handful of countries has shown how difficult it is to stamp out a disease.

And it is the same with measles – a handful of countries are holding back the eradication of measles.

Measles eradication could conceivably be stymied not by the developing world, but by dissenters in rich countries such as the UK

Thats right. My rich, upper middle class fellow countrymen and women. And their American rich upper middle class counterparts. Some of whom think the idea of AAP appealing for help to save kids lives is funny to the point of making jokes about the deaths of children:

From: krstagliano
Date: Feb 16, 2008 6:57 AM
Subject: [EOHarm] Re: JB, email from AAP looking for sick kids
To: EOHarm@yahoogroups.com

Can you imagine the ad campaign? Dad sitting in a confessional proclaiming his remorse and grief for not vaccinating his child, while the bell tolls in the background. Then a quick shot over to a small pink casket with a dolly on top and mother on her knees sobbing in front of the altar……[]

KS

Hilarious eh? Those whacky guys and gals at EoH really know how to make with the funnies.

Please don’t let this morally and scientifically bankrupt bunch of me-me’s keep hogging the media with their poor science. Support the AAP in the US and the NHS in the UK.

Ah, what the hell

30 Jan

It may be temporary, it may be less frequently updated but for now you can consider LB/RB open for business.

EDIT:

When I closed in October 2007 (well spotted Kristjan!) I got literally inundated with email expressing sorrow, frustration, remonstration that I was giving in and lots of warm wishes. I hope I managed to reply to everyone, if I didn’t then I apologise but it was (if you’ll excuse the self-referencing humour) manic. The day after I shut, I woke up to find GMail reporting 76 unread emails.

I was taken aback at how strongly people felt and immediately began to feel a bit guilty but I was convinced I was right to do it and I’m still not unconvinced 100%. I cannot let my kids become targets.

However, a few weeks ago a friend of mine who lives in the same town I do and who is also a manic depressive took it upon himself to become my ‘protector’ and started posting under a pseudonym to various blogs hostile to the stance of mine. Even now I still don’t know how many blogs he posted on. But anyway – the point of me telling you this was that it immediately started up again from ‘certain quarters’ (no prizes for guessing and no need to mention the blog or name in question) and I realised that it didn’t really matter if I was posting or not – it was still going to carry on.

With that in mind, the biggest reason for stopping seemed a bit pointless.

However, I’ll be honest, I’ve enjoyed not blogging. I won’t ever again get so caught up in it. It was nice to sit down and read a book for pleasure after the girls were in bed and so I intend to not lose that. It was nice not to have endless blah-blah wars with Brad Handley running into gajillions of comments so I’m going to be applying a very simple rule to comments: if they annoy me in any way I will simply delete them. If anyone doesn’t like that then boo-hoo. Get your own blog. My priority in doing this is my own peace of mind.

No more family mentions at all. Pics of the kids have been removed from Flickr. The videos of them are gone from YouTube. That’s a high price to pay, especially considering that one of those videos did one of the best things I could imagine – reached a man in need and helped him.

I’ve had a few questions reach me since yesterday. I’ll deal with them here:

1) What about the Group blogging?
Amanda (who is unavailable right now) has set up a fantastic resource called GreyMatter/White Matter which has all the LB/RB team bloggers on it. I am more than happy for bloggers to post here again if they want to but I would like to talk to Amanda first as GM/WM is her project.

2) Might you shut again soon?
I might, yeah. I really don’t know. I don’t want to. I enjoy writing and this grand old lady has been around for five years now but I have to have a bit of perspective. Its not up to me fight every battle going. Family, health, peace of mind, meals, then blogging.

So – lets get to it 🙂

From Mike McCarron to the Autism Hub

27 Jan

What follows is the text of an open letter, Mike McCarron, grandpa of Katie McCarron wishes to pass on to Autism Hub members.

An open letter to members of the Autism Hub.

I wish to thank each of you for your words; both about Katie and about people with special needs in general. In a world where differences easily become reasons to devalue people, your words have always conveyed respect, dignity and love for those with special needs.

I know that each of you from time to time question if you should express yourself and wonder if you are making a difference. Your opinions and descriptions of your travels in life have made a big difference to one grandfather and I suspect to many other parents.

In the days following my granddaughter’s death I was very upset. As I read comments from autism “advocates”, I moved from upset into anger. Many wanted to twist what happened to fit into their own agendas. All of you know the dialogue. I began to feel that all reason and common decency had been beaten out of society and replaced with hysterical and illogical screaming. Every time I would read some “advocate” say they could understand how a person could kill a child with autism I would bristle and await their self serving monologue of martyrdom. I even viewed a film clip that turned my stomach but it was receiving wide acclaim.

Then I encountered a different film, one of a little girl bouncing on a trampoline and I met Kevin. Next I found Kristina and the rest of your sites followed at different times mostly by reference from one of these two. During the extremely long trial process of twenty months I have visited your sites, some almost daily. Sometimes I would comment under a pseudonym but most of the time I just read and drew strength from your thoughts and your love. My interest in your posts varied by topic but I was always gratified and reassured by the love you expressed for your children and the respect shown for all people with differences.

I have had the pleasure of meeting some of you in person, I have corresponded with some of you, and still others I know only through your words on the internet. But words are so vitally important. The words used by some are frightening, intended solely for shock value, but are very divisive in the long term. Every time an “advocate” classifies autism as a fate worse than death they not only display the weakness of their own mind, but they do a terrible disservice to every autistic person. Your words and posts, firmly grounded in respect and love, foster the understanding needed for social movement toward improvement.

I sincerely hope that parents new to the autism community encounter the hub and your sites long before visiting many others. I find it strange to recommend sites that value human dignity; every site should, but too many don’t. That is what makes your sites so valuable. It seems that autism falls prey to every kind of con artist, they need to be exposed. It also seems that anything can be said about people with autism if the person saying it claims it was done to create awareness, they need to be set straight. Please continue to lead by example, do it as time permits but do what you can and what you already do so very well.

Sincerely,

Mike McCarron

Dear Katie

16 Jan

As I write this, your Dad, Grandma, Grandpa, Uncle and Aunt are striving to bring you some justice. I don’t know yet what the jury will decide and I can only guess what trickery those who did you wrong may employ to wriggle out of their responsibilities.

However, I wanted to write you this letter as it occurred to me that although your picture sits on the bookshelf of our home, next to the photos of my own autistic daughter and although I have written about you from time to time I have never addressed a letter to you.

I wanted to tell you dear that I am so awfully sorry that I never got to meet you. Your Dad and your Grandpa came to see us and brought us some lovely photos of you. In all of them you were smiling and in all of them the adult with you – your Grandma, Grandpa or Dad – were smiling proudly. I can understand that Katie. You were obviously a little girl who anybody could be proud of. I hope to one day be able to tell you that when I can come and visit you where you’re resting now.

I also want you to know that your Daddy, your Grandma, your Grandpa, your Aunt and your Uncle and lots of your teachers spoke up for you sweetheart. They stood up to be counted and said that you were loved – adored – that the fact you were autistic should not ever be used as a justifiable reason for hurting anyone. They told the world what you were like. They wore pink ribbons to show the world that you were remembered. I wore my own pink ribbon everyday too.

One night, my own autistic little girl woke up about 3ish and we sat and I told her about you and about how much you were loved and how brave and steadfast your Daddy and your Grandma and your Grandpa were. Her favourite picture of you is the one where you are sitting on your Grandpa’s lap. I think it is her favourite as she remembers sitting on his lap when he and your Daddy came to visit. You are both little girls who see the purpose of a Grandpa!

Your Daddy is a hero Katie. A man who will not ever stop fighting for the rights of his daughter. A man who has stood opposite the person who wronged you so viciously, looked that person in the eye and remained dignified and composed. A man who has been buffeted from all sides and who simply misses his little girl and wants to do right by her. Your Daddy called me ‘pal’ and hugged me when he came over to see us. I am proud to be thought of as a friend by such a fine man as your Daddy.

The real tragedy is that any of this happened at all. There are no excuses for what was done to you. Whatever the verdict comes back as, the truth is that you were betrayed and snatched away from those who loved you. Those who wronged you – those with no answers – still try to wrong you. They blame vaccines. They blame autism. They blame mental illness. They look everywhere to place blame except where it deserves to be placed. In doing this they seek to cheapen and diminish the enormity of what was done to you. Your family will not let them.

Take care dear. I hope very much that one day I will be able to say some of this to you. I will bring you a toy from my girls and tie some pink ribbon around it. Until then please rest in the peace you so richly deserve. Your family continue to light a candle for your darkness.

Please Note: There is a living memorial for Katie should anyone wish to contribute.

The starting gun

10 Oct

One of my high school philosophy teachers (at a Jesuit high school here in St. Louis) used popular music of the time (70’s and early 80’s) as a tool in classes. I mostly remember using Supertramp (Crime of the Century) and some Pink Floyd (“Welcome to the Machine” was a favorite). No surprise, then, that this habit continues to today. Check out the pop-culture label at 29 Marbles for some of my earlier posts using pop-culture as the starting point.

I’ve been a Pink Floyd fan for a long time, and like any true Pink Floyd fan count The Dark Side of the Moon among my favorite albums, by anyone, of all time. The song “Time” is an excellent reflection of the fleeting nature of our time in this world. The second verse includes the following lyrics:

You are young and life is long and there is time to kill today
And then one day you find ten years have got behind you
No one told you when to run, you missed the starting gun.

These lyrics are quite literal, and it is not too difficult to catch the meaning. But I gained a bit more insight into these words, especially the last line, while watching a documentary of the making of the album (told 30 years after the fact).

In the documentary, Roger Waters talks about a teenage conversation with his mother and the realization that it was time for him to start living his own life, that the “starting gun” had fired. One of the most important jobs a parent has is preparing kids for life on their own (however you may define that), a life that they are in control of (to the extent that anyone is control of their own lives).

There is a somewhat well defined path that we typically, though not always, can follow with our normal (in the statistical sense) kids. And many of us have come up with our own ways of preparing our kids for what lies beyond childhood.

But how do we let our kids, especially our autistic kids, know that the starting gun has fired?

Why I went to School

5 Oct

By Guest Blogger TITO RAJARSHI MUKHOPADHYAY

I was either sitting in my class room or on one of those hanging clouds, which I saw outside before entering the school building, dangling my legs down towards the earth.

Wherever I was I was fascinated. How many heads can the earth hold? So I had to jump down only to realize that perhaps I had a big change inside or outside me. I had a definite idea that I got transformed into a hat. And as a hat, which was possessed with fascination and curiosity about those many heads on earth I was left with no option but to stand up and get busy.

I first happened to sniff Mr. Butler’s head, which happened to be bald and shine from the light of the fluorescent lamps of the classroom, reflecting them in a mysterious way. ‘Would it reflect my nose too?’ Mr. Butler had no idea about my keen interest on his head. So he had to stand up. And because he stood up I had to move on to a new head.

This was the head of Simon or Dan. The name did not matter much to me now. The head mattered. It was a hair filled head and there was enough room to sniff. Sniffing a hair filled head needs a good experience. You would not know what mystery it hides below the hairs. From my past experience I have known that each hair filled head is a smelling mine by its own rights specially, during a midday. I think Simon or Dan, whoever was the owner of that head enjoyed my nosey quest. That is because like me who is affected by Titoism, he was affected by Simonism or Danism.

However his one on one aide Ms. Jackson did not approve of my inspection. So I had no option but move on towards her head. It was complex!

By now there was a murmur of alertness in the class. Maybe they could sense the presence of a very nosey hat around which was dutifully completing what it was supposed to do. -Smell the rest of the heads!

I came back home later with some memories of learning about the many smells I collected in my olfactory channel.

After all we go to school to learn.

Housekeeping

27 Sep

Just a little bit of housekeeping news about this blog.

Firstly, as I said awhile ago, this blog is now a team blog authored by many people. Please note when thanking _me_ that there’s a good chance I didn’t author the post you like 🙂

Secondly, You may have noticed the (now removed) large yellow box at the top of each page informing of the change of domain name. I did this as I felt that the site was no longer accurately represented by the domain ‘kevinleitch.co.uk’ – its written by more people than just me now. So, to reflect this, I have changed the domain name to leftbrainrightbrain.co.uk. kevinleitch.co.uk will still get you to this site but you’d be better using the new domain.

Thirdly, I have changed hosts for this site. The decision to do this was not taken lightly. My previous host is a good friend and he runs an excellent service. However, my bandwidth requirements were simply getting too large. This was brought home to me forcibly awhile ago when the site went down for the last day or so of the month as I ran out of bandwidth.

After Jenny McCarthy went on the Oprah show my traffic went through the roof. I was confronted with the distinct possibility of this site going down in the middle of the month. Just as an example, this site usually gets approx 4,000 unique visitors per day. After McCarthy went on the Oprah show, this figure more than doubled and I was pulling in over 8,000 unique visitors per day. The increase was people using Google/Yahoo/MSN etc to search for details about McCarthy and of course, Generation Rescue etc. I rank very well for these phrases (first page).

So, I had to move to a host that had a larger bandwidth allowance, which I have now done. the move was fairly painless I’m glad to say.

I was able to do this due to the generosity of people contributing money to me which allowed me to buy a hosting account with much more space, bandwidth etc. To these people I say a heartfelt ‘thank you’. This blog has been on the web for over 4 years now and I really didn’t want to have to retire it due to the fact it was very popular. Thanks to these people I won’t have to.

However, hosting is not a static purchase. I’ll need to renew the account every year. If you feel so inclined you can donate to keep the site alive by using the PayPal donation button in the top right of the page.

So, my blog is dead. Long live the team blog!

CDC: “Thank you, Sallie, May We Have Another?”

27 Sep

A CDC study released yesterday found no evidence to support “a causal association between early exposure to mercury from thimerosal-containing vaccines and immune globulins and deficits in neuropsychological functioning at the age of 7 to 10 years.” In other words, vaccines don’t scramble your brain.

The study didn’t examine autism as an outcome, although that is almost certainly what it was intended to get at. Instead, it looked for whether children’s exposure to thimerosal before birth or in infancy had any relationship to their later performance on 42 standardized tests which one would expect to be affected by autism. For each of the 1,047 children in the study, the researchers assessed speech and language; verbal memory; achievement (letter and word identification); fine motor coordination; visuospatial ability; attention and executive function; behavior regulation; tics; and general intellectual functioning.

CDC tried so hard. They invited one of the queen mercury moms, Sallie Bernard of “SAFEMINDs,” to participate in the planning of the study. They brought on a panel of outside advisors. The team spent at least two years administering forty-seven separate tests to each of the children and analyzing and writing up the results. They printed every piece of data generated in a companion volume to the published study.

They got kicked in the teeth, but don’t feel bad for them. They should have known better.

The autism-vaccine contingent has responded by spluttering about the study not having been large or random enough, and by accusing the researchers of being biased and of ignoring important associations in the data. It’s no news that these people don’t believe anything that comes from CDC – they’ve said as much, very clearly. But one would think that if you let the antivaxers in on the process from day one, if you were totally transparent, they couldn’t object, could they? They’d have to see the light when the results came back and say, “Well! I guess it’s not the vaccines after all!”

CDC, if you really thought that would happen, you were so, so wrong.

The appearance is that Sallie Bernard was going along with all this up until the day the results came in and – shockingly! – showed thimerosal didn’t do one bit of harm. If she’d thought from the outset, as a SAFEMINDs press release now claims, that there weren’t enough kids in the study or the sampling were biased, does anybody think this gadfly would have nodded and smiled and gone right along with it?

No, everything was fine and dandy as long as she was enjoying being fawned over as a “representative of the autism community” and a fellow-scientist instead of the commercial marketer she actually is. Here’s a clue, Sallie: If you’re going to play scientist, you have to follow the rules of science, and that means you stand by your results. You don’t get to say “heads I win, tails you lose” by waiting to see the outcome before deciding whether the study was any good.

And you really don’t get to have CDC at your beck and call, spend hundreds of thousands of taxpayer dollars to do a study to your specifications, then turn around and call them liars when you don’t like how it comes out.

And you, CDC? You’re not just a victim here. Every time you say “let’s do more research” or “we are examining this issue” in order to appease the mercury moms, you increase the chances that kids will go unvaccinated because you failed to give their parents confidence in the safety of vaccines. When you say a study is reassuring and then highlight what is virtually certain to have been a chance finding (a statistical association between higher thimerosal exposure and transient tics in boys) without making it abundantly clear that some false associations were inevitable given the study design, you defeat the purpose of doing the study. People who understand statistics weren’t the ones who needed to be convinced thimerosal is safe; the antivax crowd will never be convinced no matter what. You needed to speak to the well-meaning parents who worry about the rumors they hear at playgroup, and not only did you give them something new to worry about and whiff the opportunity to show them that the likes of Sallie Bernard are all about the rhetoric – you managed to tee up for yet another round of Righteous Long-Suffering Parents vs. Heartless Government Scientists.

Haven’t you learned yet who wins that one? Or are you going to invite Sallie back for another round of research?

Postscript: More commentary on this study by Arthur Allen, Orac, Joseph, Interverbal, and Kristina Chew.

I need your help readers

11 Sep

As you may (or may not) have noticed, my output on this blog has lessened over the last few weeks. There are lots of reasons for this – I’m working a lot more in the evenings for example – but for a variety of reasons I simply can’t blog as much as I used to.

However, I do not want to either stop blogging or stop _this_ blog. So what I am proposing is that Left Brain/Right Brain undergoes a bit of a change. Not in focus so much but more in style, content and – above all – writers.

I want to make this blog a multi-author blog. That is the first change. I want to ask you, dear readers, if you would like to consider becoming bloggers? I am not asking for any kind of commitment in terms of time or regularity but it never escapes my attention that there are some pretty damn smart people who comment on my blog (and no doubt lurk too) but who don’t own a blog themselves. I would love to see your thoughts expanded into semi-regular blog entries. I’m also aware that there are people who already have a blog but who don’t post very much – maybe you would rather move your efforts to a team based blog?

What I would really like is to get a team of say 20 people blogging which would assure that there was at least one post per day made.

You will not be censored in any way but your subjects should be about your experience with autism, your familial experience with autism or your professional experience with autism. If you write about these subjects I would only tolerate ‘acceptance’ led posts (not to say every post you make must be about acceptance but you know what I’m talking about).

I would also like to see autism science posts and posts exposing autism related quackery.I would expect these posts to be well referenced.

You can post under your real name, or a pseudonym (or both!) – you don’t even need to tell me who you are. I don’t care. I’m interested in what you say, not who you are.

I guess I would like to see this site become more of an ezine/magazine rather than a blog.

If you’re interested, let me know, either in the comments section or by email (kevleitch@gmail.com).

Kev Tumblr

30 Aug

I’ve signed up for a new service which is a bit like a multi-media linkblog. If you’re interested it has an RSS feed of my entries. Bear in mind though it may get pretty random on occassions.

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