As the saying goes, it's not paranoia if they're really out to get you. In California, county health departments, illegally and with the complicity of school districts, are compiling data on doctors who write vaccine medical exemptions. They are gearing up to Wakefield the few brave doctors who treat our children. They are making lists that could result in fewer treatment options in the future.

Nobody reads autism resources for fun. It starts with a diagnosis and evolves based on our children's medical needs. My greatest resources are my children's labs, which I only have because of those doctors.

While it may be a romantic academic exercise to compare autism reading with the French Revolution, the time for that is later, in hindsight once the battle is won, not while we are starving and selling our hair and preparing to storm the Bastille. Our victory is anything but certain. I offer you Voltaire: It is dangerous to be right in matters in which the established authorities are wrong.

I ask again, Whose idea? The journal editor? And how did they strike upon such an odd topic at this exact time? Did someone else suggest it to them?

Prof. Rose, reading your last response I think I wasn't "paranoid" enough! And I put that in quotation marks because I actually think my concerns are realistic. In actual fact it is They who are paranoid, and cornered rats can be vicious.

Jonathan

I believe the comparison with the Ancien Regime is very close. We are dealing with absurd privileges and franchises: ordinary citizens are being placed under appalling burdens - we are all being sucked dry but the state is not working. Perhaps it is falling apart under it own contradictions, and lack of self criticism. I am sure Hillary is the new Marie-Antoinette.

Honestly, folks, let's not get thoroughly paranoid here. The journal editor did approach me about commissioning the article (thank you, Ronald). I explained to him/her the approach I was going to take, stating that I would interview people who believe that vaccines cause autism and ask them to discuss their reading, though the article itself would be objective and take no position on the vaccine-autism controversy. The editor was agreeable to those terms. (I'm not now revealing the title of the journal because pressure might be applied to the editor to spike the article.)

The working title of my article is an allusion to a classic study by the eminent historian Robert Darnton, "The Literary Underground of the Old Regime," which discussed the subversive (and censored) books that circulated surreptitiously in France before the Revolution, and ultimately led to the storming of the Bastille. And yes, I do think that the movement to which AoA belongs is a similar kind of underground. What autism activists read and write is often censored or ignored by the mainstream media -- but it still circulates and has an impact. Don't you sometimes feel like a member of the French Resistance?

Yes, people like Dr. Poland have published journal articles deeply hostile to anyone who has any reservations about vaccines, assuring his readers that they're all kooks and never allowing them to speak for themselves. My approach will be entirely different. I will allow vaccine skeptics to freely discuss their reading, and I will quote them extensively and in a nonjudgmental fashion.

As for Dr. William Campbell, yes, I have occasionally lunched with him at the Drew University Faculty Club. He's a brilliant scientist who thoroughly deserved the Nobel Prize. Yes, he worked for Merck, but there he developed a treatment for river blindness. As far as I know he never worked on vaccines, a subject I have never discussed with him, and he is in no way involved in my study. Really, this is pushing guilt by association a little too far!

I'm curious about academic journals "commissioning" studies. It smacks of astroturfing. Your interest may be pure, but it's a problem if journals want to know what we're reading. There are concerted efforts to stamp out information sources that the Medico-Political establishment doesn't like. In repeated articles, Gregory Poland, editor of the journal Vaccine, urges doctors to use targeted psychological tactics to persuade vaccine-hesitant patients, BASED ON WHICH INFORMATION THOSE PATIENTS USE. (http://www.medscape.com/viewarticle/839980, http://www.ncbi.nlm.nih.gov/pubmed/22504410, http://www.nejm.org/doi/full/10.1056/NEJMp1010594#t=article). Isn't a study about who's reading what just a roadmap to give those sources the Wakefield treatment?

Your title "Autism Literary Underground" has a negative connotation. Published books and studies aren't underground, blogs, Yahoo groups, meeting transcripts, conference powerpoints, docmentaries, plays, VAERS reports, even treatment efficacies aren't underground. People share, publicly, often. The rate is 1:41 kids in New Jersey. That's not "underground", that's sitting in the middle of the road, playing with a toy truck while getting shot at by police. There's nothing sub-rosa about autism anymore except in the data massage department at the CDC.

Which journal wants to know? And if your IRB at Drew approved it, should we consider that their star Nobel Laureate is a former Merck scientist and Merck Animal Health HQ is across the street from your campus? What relationships led to this "commission"?

Jenny: I hope my research will lead to a better understanding of how families cope with autism, specifically focusing on the books and news sources that they find helpful (or unhelpful). It will allow members of autism families to discuss their reading experiences frankly and in their own words -- something the mainstream media does not usually allow. It won't help me secure a job since, as a tenured professor, I already have a secure job, and I have received no money from anyone to underwrite this research (which is pretty much cost-free anyway). I honestly can't imagine how such research could be misused. I've interviewed a number of readers, and so far none of them has suffered an adverse reaction, but they are of course free to terminate their interviews at any time.

Commissioned by a major academic journal is going to be the primary obstacle to this research. Any parent of an autistic child knows that a lot of good research is not being accepted by major academic journals. Those of us who read medical research are well aware of which journals publish junk and which publish valuable research. Discovering how we research and what we read will not change the salient truth of what we witnessed and what raw data we have acquired in the pursuit of health for our children.

PS: I can be reached at either [email protected] or [email protected].

Depending on the personal convictions of the author/editors, this article has the potential to use (or twist) this data to support conclusions from either side of the issue.

We've all seen televised examples of parents of vaccine-injured children, who quoted reams of peer-reviewed studies published in mainstream scientific journals, only to have been edited down to a partial quote of one response, taken entirely out of context, to make them appear to be uneducated, selfish fools.

That makes me extremely reluctant to even consider participating.