The need for medical intervention in autism is there. You could outlaw DAN and other such organizations under penalty of death and the practices would still exist. The need is there and it is a desperate for a large number of parents.

If you want to fight DAN then find a working medical alternative. That and nothing else will shut DAN down. There are medical differences between autistics and the rest of the population. Learn how to exploit them.

My personal goal in 2009 is to lobby these organizations to take the lead and advocate for evidence-based science practices. I also am working on some projects in my state, along with our developmental pediatricians and our Maine CDC for education that is evidence based. I also am working on removing the CME for physicians who attend DAN! conferences.

I understand and good luck to you.

Most scientists and researchers I know have no time or energy to fight for changes to IRB protocols. You would need to change a system that is so vast, so regulated and worried about lawsuits, that it would take decades.

Heck, even people in the humanities and social sciences conduct research at the whim of IRB approvals. Any research, even of historical data, involving humans has to go through the IRB process at a university. It takes about two to three months to get a reply to the “intent to study” at some institutions, though others are faster. (I waited six months for my last approval — which merely meant I could submit my actual survey for IRB approval in round two… another two month process.)

Honestly, you study what interests you and what you can get quickly approved. For doctoral students, graduate fellows, and post-docs, time is very limited. If you know you have a post for two to four years, you cannot suggest a study that will take more than a few months. The approval process will eat one year, the data collection another year or two, followed by writing the various papers.

As I’ve said, you’ll be hard pressed to find researchers — especially when most of us need external grants and funding just to survive. My “salary” is grant money. It means I have to do research someone is willing to support and endorse. In my case, a college within the university approves everything I do, so I’m not directly aware of funding sources. They do that to protect objectivity. However, what gets funded is almost as important as by whom it is funded.

My research field — language acquisition (written), education, and autism — is receiving less and less funding. I’m sure most fields are struggling. As a result, I tailor my research to things I know will sound great to the widest possible audience (meaning as minimally controversial as possible). Few people are going to criticize research involving technology and special education.

Summary: I need to survive. I need money to pay bills. In 2010, I need to find another job, ideally as a tenure track professor. As a professor, it will be “Publish of Perish.” That’s also why I’m slipping back towards writing and general rhetoric… “writing programs” are the latest trend on campuses (writing across the curriculum, writing studies, first-year writing, and so on).

One does have to survive within a system. Plus, six or seven years dealing with IRBs and research, I’d rather write short stories and poetry. Creative non-fiction doesn’t require lots of paperwork and IRB committees.

To say you are more active was no assumption, nor is it in any way an insult. I have found several links / debates involving “CS” that started on this forum. Being active is certainly admirable… I just lack such energy, now.

I did confuse you with CS and I apologize.

You provide good insight on what it takes to gather data and I appreciate it.

I am not surprised that the IRBs are paranoid. Everything you tell me says that if any such survey were to be proposed it would get squashed like a bug based on the idea that parents cannot be frightened away from vaccines. I hope I am misreading it.

With the autism ratio of 1/160, the sample size necessarily must be large. A pilot program with 250 in each group hardly seems adequate. With the required sample size being so high I am not surprised to hear you say that most studies on autism are too small for generalization.

On the other hand, the ratio of vaccinated to unvaccinated is also very large. Statistics on the general population are ubiquitous and because the vast majority of the general population are vaccinated. What is not available are statistics on the unvaccinated population. I would start the pilot program with the unvaccinated population. But such a survey would throw the IRB into a fit and I expect that it will never happen.

Right now, the pundits throw out studies on the MMR, on thimerosal, on how thimerosal disappears in the bloodstream after three days and make the claim that these logically prove that there is no relationship between autism and vaccines. It does not logically follow. If you want to know if vaccines are related to autism, you must have a control group. I know it is a lot of work, but I do not believe I am being cavalier in calling for it.

You would need information on the parents, genetic screening data, dietary information, tons of socioeconomic data, and much more. I would want to know every single variable I could, in case there are other parallels. For example, what if more of the non-vacc parents were also organic shoppers? I wouldn’t be surprised, since many non-vaccinated children are from well-educated, upper/upmid-class families.

You’d have to do an analysis to see if any variables match the correlation, indicating you would need yet more studies. Again, we know the better educated the family, the greater the chances of an AS / PDD-NOS diagnosis. (As if the poor never have Aspergers?) That’s simply because of awareness and willingness to have a child evaluated, I theorize — but I could be wrong. AS was once called the “Silicon Valley Autism” by ComputerWorld. Why? Because so many programmers / developers have the diagnosis or have self-diagnosed. From this, we certainly wouldn’t conclude that parents with high-tech careers have more autistic children, but statistically that would be true of the diagnostic rate in California (if you map the cases reported to OSEP).

So, to control for vacc/non-vacc, you need individuals from nearly identical social, geographical, and economic backgrounds. This gets very complex and might require years to develop a valid model for such a survey. Then, you still need to sell the survey to at least on IRB at a university or public research center.

Legally, I checked our IRB forms and I cannot conduct even a survey of minors or their parents without the survey being checked by the psychology member of the board. This is because some questions can raise “damaging fears” among parents and children. You must always provide “informed consent” forms that explain you are legally obligated to intervene in matters of child welfare.

Now, if I’m a parent and someone reads the IC forms from the University of Minnesota to me, I’d be really worried. It could be a study of homework habits, but the IC form still sounds like one of the drug warnings on television: “In rare cases, people die during studies.”

I have challenged the IRB to do studies of how children and adults with autism use the Internet. The last study was deemed “potentially harmful” until I revised the methodology twice. (I wanted participants to maintain written or offline journals of activities and how they felt during the activities.)

Honestly, IRBs are paranoid. There are historical reasons for the paranoia. Now, just as a teacher has to report abuse, a researcher has to act “in loci parentis” (sp?) during studies. That does make matters complicated. I must always consider the welfare of a child (anyone under 18), even if an entire study is ruined by some action I must take. (Example: Years ago, I had a student write about abuse. I had to report the writing to child welfare. Data were lost, study changed… life goes on.)

I just don’t think people should toss out “We need a study of…” so casually. Studies are expensive, time-consuming, and highly-regulated. Most are never completed, at least at R1 universities — and those failures are still important experiences. We revise the methodologies and try again.

I do know most studies published on autism use samples that are much too small for generalization. I think the samples probably start much larger and for a variety of reasons members of the population are excluded from final data. I know my IRB and department want at least 25 members of comparative populations for a simple pilot study.

As I said, just sharing my own experiences. For almost four years I’ve worked on one project and can attest that the process is slow. Very slow. If you want to follow children? You’re talking about years of monitoring, tracking everything because you can never, never trust parental surveys alone. You’d need every medical, school, and mental health record over at least five or six years.

When someone does get IRB approval, I’m sure it will be a grueling six years, plus at least two for writing, editing, and then peer-review publishing. What’s eight years?

And no, you cannot rely on surveys or data collection “post-experiential” for such a study. Too much might be forgotten or omitted. You need real-time monitoring.

I know I have things I’d rather do with my life. But, maybe the MIND Institute is up for getting this past the NIH someday. Eight years of steady work might be appealing to some statisticians.

I am a current doctoral fellow. My life is in research for at least one to two more years, before I return to my main passion and interest: creative writing / literature. Honestly, I plan to leave much of the “autism debates” to other people with more energy.

Ideally, I might spend time working with students “on the spectrum” with an interest in creative expression. Beyond that, I’ve stated before that I’m no where as driven as the “other CS” to engage in debates.

Just trying to clarify matters…