Tuesday Thoughts: Pieces of the Puzzle

The world of autism research has been hopping lately with several new studies claiming to explain potential causes of autism and the apparent increasing incidence of this disorder.  The media, including major publications, has jumped on board with the excitement about these findings.

One study outlines the potential of increased age in fathers to heighten the risk of autism in their children.  The authors of this study explain that older dads pass on more small DNA mutations to their children than do younger dads, a difference which may explain some cases of autism.  Considering that, in the population studied, the average paternal age has increased over time, it’s easy to see how the authors also conclude that increased paternal age may contribute to the increasing incidence of autism.

Other studies recently published, and then reviewed in The New York Times, implicate heightened maternal immune response in the development of autism in the womb.  Infections such as the flu seem to bring about an exaggerated immune response in some pregnant women, leading to disruptions in the development of their children.  Many studies have demonstrated a relationship between this prenatal immune system dysregulation and autism.

What’s missing in the media’s interpretations of these studies?  In the midst of flashy results, the fact that autism is still largely unexplained gets pushed out of the picture.  Although there seem to be breakthroughs on the horizon, the studies outlined above may only account for a fraction of the cases of autism. These findings and their implications are just pieces of the puzzle.

Science writer Virginia Hughes stated in a recent piece,  “how many times do researchers have to say, ‘The cause of autism is really complicated’ before journalists and the public accept that the disorder can’t be explained by a gene, a brain scan, a father’s age, a gluten-rich diet or risk factor du jour?”

I share Hughes’s sentiments.  We are dealing with what seems like a mega-10,000 piece puzzle, and we’ve yet to find all the pieces.  When we’ve gathered as may as we can, then, and only then, will we be able to put them together and start to explain.

Tuesday Thoughts: The Dangerous Rush

Last week, the Simons Foundation Autism Research Initiative (SFARI) displayed a news story on its website about bone marrow transplants reversing autism-like symptoms in mice.  This article immediately grabbed my attention because a bone marrow transplant is not a joke. The survival rate in humans is about 50% and there are a slew of extremely adverse effects from this procedure.  I had to read this article to see if the researchers were proposing bone marrow transplants as treatments for autism in humans.  Good news: they aren’t.  But, here’s the bad news:

As a result of this and other studies, families are traveling outside the US to have potentially dangerous procedures, such as one similar to bone marrow transplants, done on their children with autism.  Quoted in the news story, Judy Van de Water, an autism researcher at UC-Davis, expressed concerns about families seeking out such a procedure, which is “incredibly expensive with very little foundation in science to back it up.”

Reading this quote, I was reminded of phone calls my advisor got after his paper on propranolol and verbal fluency in autism was published.  Even though this drug study was small (with 14 participants) and not yet replicated in an extensive clinical trial, parents were asking about prescriptions for propranolol for their children.

I understand the rush.  Dealing with a tantrum-throwing, even self-injuring, child with autism is enough to drive any parent to seek out any form of treatment.  But this rush is all too dangerous.  Adopted without adequately supportive research, investigational treatments can be disappointingly ineffective, or, worse, harmful.  Perhaps the best thing a desperate parent can do is wait; wait and listen for answers.  It’s these answers, not the temporary fixes or the illusory “cures,” for which we are carefully searching.

Photo source: http://www.stockfreeimages.com/

Neurolore

I thought I’d use the inaugural post on my new blog to explain the title, Neurolore.

When I think about communicating scientific research to the general public, the image I get in my head is that of a storyteller.  Much like a storyteller, a science writer or a lay-friendly scientist works to capture attention, drawing the reader (or listener) in by explaining the importance and applicability of a particular research study.  Then, the science-teller (if you will) should share details, not to the level of scrutiny of academic journal articles, but enough to give a clear picture of what the study entails. Lastly, and perhaps most importantly, the science-teller must draw conclusions, explaining what the study’s results mean and the impact they may have.  At the end of a story, the goal of both the storyteller and the science-teller is to leave the reader enlightened and empowered with understanding. Such understanding can both establish truth and dispel skepticism. These stories are important to tell.

Thus, my hope is to be a science-teller of sorts, to share some stories – or lore, about neuroscience, among other things, here at Neurolore.

Tuesday Thoughts: The Vaccine Vacillation

For many, when autism is mentioned, the first thing that comes to mind is vaccines. Or maybe Jenny McCarthy. The vaccine controversy has lead to a heated debate in the field of autism research and in the community of parents with autistic children.

What caused this all-to-confusing issue?  One scientific paper.  This paper, published in The Lancet in 1998 and then fully retracted in 2010, revealed results linking autism to vaccines in 12 children. This paper was riddled with undisclosed conflicts of interest, falsified data, and irreplicable results. In fact, the lead author of the paper lost his medical license following an in-depth investigation of this paper.

Since the release of this paper, countless studies have been conducted to explore the potential autism-vaccines link.  No data has yet to support this link. In addition, the US has established a specific system, often called the Vaccine Court, to litigate claims related to vaccines and autism. 5,000 cases have been reviewed or are currently in process and, to date, only one has been shown to demonstrate a link between vaccines and a specific type of brain inflammation (which is not autism).

What’s the problem here?  Of course, there is a problem with the scientist who fraudulently published the 1998 paper.  But, there lies a potentially greater problem in listening to him.  This controversy has led to dramatic decreases in the rates of parents vaccinating their kids.  Accordingly, there have been increasing incidences of preventable diseases, like polio and whooping cough.  What’s interesting is that there has also been an increase in the incidence of autism, with the latest US estimates at 1 in 88.  Clearly, something else is causing this disorder.

What are the solutions?  Ending this debate doesn’t fall solely into the laps of parents.  Yes, children need to be vaccinated and parents should stop lobbying against vaccines.  But, autism researchers need to better communicate the truth about vaccines and autism. They need explain more of their scientific findings to the general public. The vaccine vacillation is just one of many confusing chapters in the book of autism.  Scientists need to start writing in this book with a lay-oriented hand, and the public needs to keep reading it.

Photo source: http://www.stockfreeimages.com/

{This post was originally published at my previous blog, http://postitjunkie.blogspot.com/}