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The Thinking Person’s Guide to Autism

7 Jun

There’s a new blog/book project in town and its right here (or @thinkingautism on Twitter or here on Facebook).

The Thinking Person’s Guide to Autism (TPGA) is the book and website we wish had been available when our children with autism were first diagnosed.

Think of us as a little bit of Snopes for the autism community — trusted, accurate, and friendly. Our essays will cover informed approaches to autism and autism treatments, as well as the personal experiences of people with autism and their families.

There’s a great team of people behind this project and I for one am greatly looking forward to the content they put out.

New LBRB Feature

10 Mar

Never one to rest easy when a new technology becaome popular, I wanted to find a way to harness Twitter to make it appealing to LBRB readers. I think I have now. If you go to https://leftbrainrightbrain.co.uk/tweets/ you’ll see a live updating list of the latest tweets from and about a selection of Tweeters including myself, Liz Ditz, Orac and others. Just leave the page open it’ll update itself as these individuals tweet. If it become popular enough I’ll port it into its own site.

If you tweet about autism and/or science that discusses autism then please contact me and I’ll add you to the list of contributors.

Jenny McCarthy Blocked Me on Twitter!

26 May

A fascinating Guest Blog piece here from Dawn Crawford, Communications Manager for the Colorado Children’s Immunization Coalition on their Twitter activities.

How One Small Nonprofit Irked a MTV Star

It’s amazing how one simple action can result in a landside of meaning.

On May 14, I realized that the organization that I work for, the Colorado Children’s Immunization Coalition (CCIC), aka ImmunizeCOKids on Twitter, was blocked by Jenny McCarthy, aka JennyfromMTV on Twitter.

Okay, so that’s a little odd. That is the only user I know that blocks CCIC.

Sure, CCIC has put out some tweets about Jenny. She has made herself a major target for the pro-vaccine movement. What is really odd is that the block was in response to only three tweets with her user name in it. In the name of complete transparency, I’ve included the actual tweets:

ImmunizeCOKids: @shuwu – great work – “Open Letter 2 @Oprah” poetic, smart & dead-on post about deal w/ anti-vax @JennyfromMTV http://ow.ly/6uY7 (May 14, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1796433253 )

ImmunizeCOKids: Poetic, smart and dead-on post about @Oprah signing deal with anti-vax @JennyfromMTV “Open Letter to Oprah” http://ow.ly/6uY7 (May 13, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1776457638 = 13 RTs of this ow.ly shortener)

ImmunizeCOKids: Jenny McCarthy is on The Doctors TV show today – very inflammatory. She is on twitter now too @JennyfromMTV (May 6, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1716401176 )

And in all fairness, here are the tweets that just included her name and not her Twitter ID:

ImmunizeCOKids: Weigh in! Future of BioPharma: Jenny McCarthy vs Autism and its effects on the public http://ow.ly/6ggj (May 11, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1765254086)

ImmunizeCOKids: Why is Oprah Winfrey promoting vaccine skeptic Jenny McCarthy? Slate Magazine http://ow.ly/5rFB – thanks @JeffStierACSH & @bobfinn (May 6, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1718911892)

ImmunizeCOKids: Agreed on the fiction of vaccines = autism part. Thanks Babble! “Jenny McCarthy To Get Her Own Talk Show?” – FameCrawler http://ow.ly/5gZ7 (May 5, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1708699412)

Social media is a very important strategy for CCIC’s mission of increasing vaccination rates to keep Colorado’s kids healthy. CCIC engages in Facebook, Twitter and YouTube to share our message of confidence in the safety of vaccines. Specifically, we use Twitter to encourage and support the majority of parents who are vaccinating their children, confront misinformation about vaccine safety and share articles from a wide array of sources.

Blocking on Twitter? What’s the Point

As someone who lives and breathes social media (I author three Twitter accounts), the blocking function on Twitter has always perplexed me. Why would you ever want to sever a line of communication in this way?

For those unfamiliar with the function, the block feature on Twitter ensures that you and the blocked user do not follow each other or direct message each other. It doesn’t prevent the blocked user from visiting the user’s profile or writing ‘@ replies’ about them. It just ensures that the user is blissfully ignorant of all the comments the blocked user is continuing to add to Twitterspace. This is from Twitter on their blocking function:

Are you sure you want to block ImmunizeCOKids? Here’s what blocking means:

You will no longer show up in the blocked person’s list of friends.

Your updates won’t show up on the blocked person’s profile page.

The blocked person will not be able to add you as a friend.

For us at CCIC, it is the rich dialogue that makes Twitter so powerful. We receive tweets at least once a week from parents telling us that we are liars and that they staunchly believe that vaccines are dangerous or that vaccines cause autism. We want to keep the dialogue open with all parents. We want to know what exactly is frightening parents and what concerns them about vaccines. It is such a great asset to be connected with concerned parents, have a respectful conversation that educates and empowers parents to make an informed decision about the health of their children.

Moreover, a ‘brand’ like Jenny McCarthy blocking CCIC on Twitter has interesting social media branding implications. It encourages us to assume that she isn’t open to any opposing views. It tells us that contrary to what she says in the media, she doesn’t want a dialogue about this issue. She wants a platform.

David and Goliath

So why are we so excited about being blocked by Jenny? It’s that she cared enough to take the time to block CCIC. It’s that she cared enough about what we are saying to end the conversation.

It’s a lot like David and Goliath. Jenny is a super-human symbol of the anti-vaccine movement (Jenny states that she is ‘anti-toxin’ and not against vaccines- aren’t we splitting hairs?). CCIC is a small but vocal organization in Colorado making sure physicians, nurses and public health providers get the vaccines, resources, and continuing education they need to keep kids healthy. Our total budget amounts to about 1,400 copies of Jenny’s latest book (which not a dime of that budget comes from pharmaceutical companies, btw). CCIC is insignificant in Jenny’s world but important enough to heed a reaction.

Can this open a dialogue?

A good vaccine advocate friend pointed out that this might be an opportunity to have the sides of the great vaccine divide sit down and have an open, real conversation. We think this is an opportunity to come together on the one issue that we can agree on which is protecting the health of children.

So in the end, this is an honest, open invitation to Jenny McCarthy to have a conversation. We both want to do what is right for children; we just have different paths to the same goal. Let’s find a common ground of respect and move forward in protecting children.

Until then, we’ll be here in Colorado protecting children from disease just like we do everyday. Jenny, we hope to hear from you soon. You know where to find us on Twitter.

About the Author: As the Communications Manager for CCIC, Dawn Crawford leads all messaging for the Colorado Children’s Immunization Coalition (CCIC). CCIC is a state-wide nonprofit that ensures that physicians, nurses and public health departments get the vaccines they need to keep Colorado’s kids healthy. CCIC is very active on the ‘interwebs’ as an advocacy organization promoting the prevention of vaccine preventable diseases. You can find them on Facebook, Twitter and YouTube.

Jenny Mcarthy on HBOT

6 May

Given the recent death of a woman and serious injury of a child in a hyperbaric chamber. It is perhaps worth highlighting Jenny McCarthy’s recent “tweet”.

Im inside a hyperbaric chamber. This thing makes me feel amazing.

If a vaccine “exploded” killing one person and critically injuring another with such clear causality, one can imagine McCarthy would be the first to stand up and denounce it. Instead, as one commentator says it’s “All risk, no benefit” when it comes to the quackery surrounding autism, and that’s before you risk dreadful gluten-free and casein-free cup cakes. Meanwhile, despite having no evidence, McCarthy suggests vaccines are dangerous toxic products and may be responsible for the start of an explosion of preventable childhood diseases.

Facebook is the new vaccines

11 Mar

I thought I’d maybe travelled a couple of weeks forward in time and was reading a particularly stupid April Fools joke news report when I saw the Daily Mail were reporting:

Of course, we do not know whether the current increase in autism is due more to increased awareness and diagnosis of autism, or whether it can – if there is a true increase – be in any way linked to an increased prevalence among people of spending time in screen relationships. Surely it is a point worth considering,’ she added.

‘She’ in this instance is Professor Susan Greenfield of Oxford University, which just goes to show that even a massively intelligent person can also be a monumental idiot on occasion too. Some other gems of wisdom include:

‘My fear is that these technologies are infantilising the brain into the state of small children who are attracted by buzzing noises and bright lights, who have a small attention span and who live for the moment.’

Buzzing noises and bright lights. I think these opinions reflect the lack of experience Professor Greenfield has with computers rather than any accurate reflection of how a PC or Mac actually works.

Note something about this totally ridiculous piece of journalism. They use buzzwords like Twitter and Facebook that the average uninformed Daily Mail reader might’ve seen but have no real idea about. They also clearly are talking about the opinions of one woman. At no point is any study or science referenced to support this Professors opinions.

In the eighties the Daily Mail was one of those newspapers convinced that ‘video nasties’ (straight to video low budget horror movies) would bring about the end of civilisation. In the nineties they were of course standard bearers for antivaccination beliefs. In the noughties they’ve published a few pieces on the evils of the nasty Intraweb.

But of course what really annoys me about this is the fastening on to autism. Its explained how naturally autistic people function online is a possible example of how the online environment (Facebook, Bebo, Twitter etc) are (oh dear god!) rewiring the brains of our children and making them autistic.

Never mind the fact that most new cases of autism are diagnosed in kids under three whos only interaction with a PC up to that point would be to try and push a rusk into the DVD tray. Never mind the fact that adult autistics are pretty wary of social networks at first. Lets just find another way to demonise autism and blame it on something else for which there is no supporting science whatsoever.

Well Harold, since you asked…

12 Dec

Over at his blog, Harold is fretting about the possibility of Autism Twitter Day really being a stealth-Neurodiversity attack:

What exactly does “positive” autism awareness mean? Is that concept consistent with “realistic” autism awareness?

Well, yeah. Look Harold, sooner or later you’re going to have to bite the bullet and accept the fact that a sizeable percentage of the autism community are interested in pursuing positive autism awareness. This means reflecting _one_ reality of autism – that there are positives to autism and they should be celebrated and that awareness of these positives is something that should be raised. This is reality. _One_ reality.

Another reality is that autism has its downsides too – we all live it, we all know that. Now, if Harold (or whomever) wants to do his own “negative” autism awareness day then – good luck to him. Personally, I’ve had enough of that but I recognise that it – just like the positive side of autism – is a reality. Harold goes on:

Still I can’t help but wonder when I see the adjective “positive” used to describe autism awareness whether it is an attempt to censor the discussion, to promote an unrealistic, feel good picture of autism

Yeah, damn that evil censoring positivity. Sometimes autism (take a deep breath Harold) _does_ feel good. It feels good to be involved in my childs life on many occasions. And as for censorship Harold, I’ve lost count of the number of times I’ve tried to comment on your blog only to note no comment has ever made it past your censorship. You, by contrast, continue to remain free to comment here.

Here’s the thing Harold. You don’t want there to be _any_ discussion of positivity in my opinion. You refuse to believe such a thing exists. You see autism = bad. End of story. The terrible truth Harold is that you are the censor. Anything that doesn’t contain a hefty dollop of misery isn’t ‘reality’ for you. Well, cool, whatever you like. However, please don’t try and dictate to everyone else – who clearly see that autism has many sides and many realities – what we should and should not talk about.