He knows that this can be the price you pay for becoming entangled with anti-vaccinationists. But he also knows that this is a subject that must be tackled.

He knows that this is not just a local issue. It is international. Non-vaccinators in Europe cause unvaccinated kids in the US to catch a disease that can kill. Hundreds of thousands still die of Measles throughout the developing world.

Some of the Science Bloggers regularly stand up and discuss this subject too. Respectful Insolence, Denialism, Pharyngula, GoodMath, BadMath and Living the Scientific Life (Scientist, Interrupted) are Science Blogs I know of that have covered the issue at least once.

Those of us in the autism community owe them a massive vote of thanks too.

Yesterday another blogger followed the standard set by Dr Offit and stepped up to lend the weight of his considerable expertise to the issue. John Lawrence Kiely, better known to many of you as Epi Wonk published a fantastic piece in the AJC which if you haven’t already, should go and read right now.

Towards the end of his piece he says:

It’s time for them to speak, run public service ads, alert reporters and aggressively rebut the spurious idea about MMR.

This is nothing but right.Two communities need you. Public health (and international public health at that) and autism. Please follow the examples set by Dr Offit and now Dr Kiely. Comment, blog, write op-eds.

This is an excellent question. I understand exactly why Dr. Offit did not cover this in his book: I think he had a very specific remit in mind and such a question went beyond that remit. Maybe he will do a an AFP 2 or maybe he is hoping another big name in the field of vaccines or autism will step up to the plate the way he has and tackle that. I hope they do too.

My field (I am a Web developer) is that of communication. Part of my job (a very large part) is devising strategies for communication, then testing those strategies in as near to real-world scenarios as possible. I’ve worked for Nike, Saatchi & Saatchi, Nat West and Channel 4 to name the bigger names (oooh, get me eh? Name dropper!) . And you thought web development was just a case of farting about in Photoshop and Dreamweaver eh?

Orac is right that at the crux of the matter is the content and framing that content in a way meaningful to the average person on the street. But when we talk about communication we have two choices – old style media (the printed word, radio, TV) and new style media (newsgroups, websites, email, texting etc). And these days we are just beginning to see the emergence of a combination of the two – YouTube (i.e. Google) for example are testing ways to present live streaming video that a user could be shooting from their mobile phone or handycam.

The medical and science community need to look at the web resources they have. They are, with no offence meant, pretty pitiful. PubMed allows you to construct an RSS feed but thats about it. All the major journals (Pediatrics etc) offer static websites that charge people to look at papers. Not good enough.

For an excellent example of a group of people who have grasped – or who are at least trying to grasp – the new media available to them we could look at the online campaign of Barrack Obama (I’m British, I don’t care who wins the election so please – no political rows )

The site has blog which is regularly posted to (not some dusty afterthought) and has some nice touches – a Flickr photoset to show ‘behind-the-scenes’ footage for example – with a prominent RSS link and the ability to post entries to del.icio.us, Digg etc.

‘Barrack TV’ showcases some nice video shot by both his team and ordinary supporters (I think).

And then there’s the awkwardly named ‘MyBo’ which is essentially a social networking site in the manner of Facebook/MySpace/Bebo etc.

These are great innovations and show that politics in America is keenly aware of how to reach people in ways they want to be reached.

By contrast, publishing a study of great importance such as the recent Lipkin study and pushing it out via a Press Release is good – but not enough. Everyone in the vaccine and autism community heard about it yes, but we would’ve anyway. The people who need to be reached are new parents.

One of the things I do is have a ‘Left Brain/Right Brain’ Twitter account and then push site updates, site news, interesting news snippets out to that group of people. Its a very quick and easy way to connect with people. How cool would it be to see an AAP Twitter Group?

So my message I guess is that, yes the content is vital. But equally vital is both reaching people and how you reach people. Static PR releases to old media newspapers aren’t enough. Static one-dimensional databases with results that lead to closed off content isn’t good enough. As a collective, the science community need to come together with a media group and push their greatest asset – their expertise. Because, right now, its sitting dusty and underused.

A couple of bloggers praised the book for its tone, that I never appeared to get angry at the false prophets described in the book. The reason for that is that I’m not the father of a child with autism. If I were, I would have been quite angry. Angry because I think that the anti-vaccine forces have taken the autism story hostage.

I’m angry. I’m damn angry. I don’t want to blog about vaccines. I don’t want to blog about the frighteningly casual way serious medical interventions are tested on autistic children like they are so many Guinea Pigs.

But I have to. I have to because the people who believe this crap and the people who push these utterly untested ‘treatments’ are vocal and not going away. There are over 20 Yahoo Groups dedicated to the idea of medically treating autism, based on the idea that they have been made autistic due to vaccines and/or other sources of toxins. To give you a flavour of what these parents do to their children, here is a post I made a week or so ago. I’ll quote a piece for you here from four different parents:

It just takes time. My twins (almost 8 now) have been doing IV CaEDTA roughly every 2 weeks for over 3 years (71 and 78 IVs). The first half-dozen or so were really traumatic, then the kids started realizing it really wasn’t so bad after all and got to the point where they didn’t need to be held anymore, then they didn’t cry anymore, etc.

…….

My son is 6 and I have to hold him down for the IVs – we’ve done 10. Today he got poked 3 times and has purple hands from blowing veins.

…….

My 15 month old son had a porphyns test by Phillipe Auguste labs that showed very high lead and mercury that spiked off the page, so our DAN is starting him on DMSA suppositories

…….

I started chelating my son at 13 months of age w/ IVs. Dr Bradstreet’s office chelates little kids. It was actually easier to give him the IVs before he turned 2. My DAN, Scott Smith, says that kids under 3 chelate much faster and it is a good idea to start early.

This is what autistic children are dealing with at the hands of their parents. This is what anti-vaccine quackery has led directly to.

So that is what is going on for these poor kids, right now. What about what they do need?

Autistic kids need education to become autistic adults. The reality is that there is no cure and to be perfectly frank with you, I don’t care about a cure one way or another. What matters to me and I strongly suspect to the vast majority of parents of autistic kids is that their kids get helped with the things that really do help. Speech therapy. Appropriate, autistic specialist learning environments. These will help.

And lets not forget something here – there are a vast multitude of both diagnosed and undiagnosed adult people on the spectrum. They need help too. They need living arrangements. They need education-to-work programs. They need doctorswho ‘get’ autism.

Dr. Offit is absolutely right to say that the biggest barrier to both young and old autistic people getting the help they need is the continuing unscientific idiocy that the autism/anti-vaccine zealots continue to spew. The media eats it up. If you think I’m exaggerating, ask someone you know who’s not involved with autism what they think of when you say the word ‘autism’. If they don’t say ‘vaccines’ 9 times out of 10 I’ll eat my hat.

So please ScienceBlog readers and scientists of the future – remember that we are here and that we need you. Please learn about autism by talking with autistic people. Learn what they consider to be their needs. In the meantime, I’ll do my bit by continuing to blog about vaccines and quacks.

Megan was born on 17-02-00 weighing slightly more than usual. The first few months of her life were totally normal- we didn’t feel concerned about her health or well-being at all. That changed however when she had her DTP jab.

I know there’s been a lot about the jabs (particularly the combined MMR jab) in the news but we (or rather I, Naomi was a lot more dubious than me but I managed to convince her) decided to go ahead with it and on the night of her first lot of jabs Megan began projectile vomiting and developed a temperature that peaked at 102 degrees. We phoned for an Ambulance and took her to A and E where they brought her temperature down, then told us they couldn’t find much wrong with her. We were relieved but by the end of that week we knew something was wrong with Megs. She seemed subtely different.

There was nothing you could put your finger on as such but the difference was there, she was late walking and was uncomfortable around others.

2003 was the height of the vaccine/autism scare in the UK and the US. Rumours (heavily fuelled by a UK media looking for the next ‘shock’ story and a US media looking to uncover the next ‘watergate’) about the various vaccines our children took were spreading like wildfire and I was as credulous as the next parents.

Our daughter had had an undeniable reaction to her DTP jab and we…we had a consequent overreaction and made an association where there was none.

Why did we do that? For a number of reasons really. First, we’re not scientists or doctors. Second, we were still in the ‘grieving‘ stage in that we had only very recently received the official diagnosis of autism and were reeling as a result – ready to clutch any straw. Third – we were totally ignorant of the personalities and politics behind the autism movement. We assumed everyone with the title ‘doctor’ would be rigorous, objective and honest.

At the time, our overreaction led us to some extreme thinking. We even made a claim for damages to the Vaccine Damage Payment Unit. One irony of this event was that by the time the claim was processed and inevitably rejected we had long since abandoned the idea that vaccines had any bearing on causing our daughters autism.

Over the following five years I’ve read about, commented on and blogged about so many aspects of the various autism/hypotheses that I think I could probably write my own book on the subject (if I had the gumption and inclination) but one thing remains clear to me above all else. There is nothing that is accessible to ordinary parents to spell out the science in clear English. Some may claim that’s dumbing down science. Tough luck. Dumb it down then. Parents need to understand it. I was lucky that I became acquaintances with parents of autistic kids who were also scientists and who were able to explain the science to me so I could blog about it effectively.

Something else that would’ve been invaluable would’ve been a book like Paul Offit’s Autism’s False Prophets.

Its a very strange feeling to read a book that you have literally lived. I know many of the events intimately. I know the names, beliefs and attitudes of many of the books ‘characters’ very well. I have debated/argued and been threatened by many of them. My daughter’s name and disability has been reviled by some members of the groups they have set up.

In later posts I hope to discuss particular issues in more depth but in this initial post I wanted to say who I am and explain my point of view. I also wanted to make a very general point about scientists.

Paul Offit (and several of the ScienceBlog bloggers) have set a standard. It is not acceptable for scientists to not participate in debates of this magnitude. You must get involved. You must speak clearly, using language the majority of people understand. You can do this via consultations with parents, via blogs, via interviews with media and when you serve on local or national government bodies.

You need not engage directly with the quacks who peddle autism quackery. Do not debate them directly. But demand equal air time. Write to local papers. Hold vaccine-education clinics. Hold autism-education clinics and invite autistic people to speak. Do not feel you have to listen to anti-vaccine rhetoric just because its coming from the mouth of a poor, poor autism parent.

And let me tell you another thing too. There are far worse things in the world than autism. Measles for example can kill people (and has done, twice in two years in my country). Mumps can make boys infertile. Polio can kill, maim and cripple children. Whooping cough can kill children. Personally I’d rather my child was autistic than y’know, dead.