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A Community Conversation About Health and Responsibility: Vaccines and Beyond

Part 9: What is Autism?

Our goal this year has been to offer a non-polarizing conversation around public health.  Our strategy was to explore the issue from unusual angles.  We hoped to pull away from the divisive debate over one tool (vaccines), and broaden the conversation to include respect for diversity and acknowledgement of the grayness of this issue.  With sincere hope that we have been successful, we will now address the subject of autism.  Welcome to Part One of Three.

First, let us ask you to consider your existing ideas and beliefs about autism.  Now take a deep breath and set them aside for a moment.  Some of what we write may be a surprise to you.  We certainly encountered many surprises as we researched these articles.  

What is autism anyway? The simple truth is, we don’t really know.  The diagnosis and definition of autism has been changed repeatedly over the last century and continues to be controversial.  The term was first used in 1911 to describe a symptom of schizophrenia.  Since then, the definition has bounced all over the place, always problematic in one way or another.  The current strategy is to lump a wide variety of conditions under the broad umbrella term Autism Spectrum Disorder.  This diagnosis now covers a bountiful cornucopia of behaviors, traits, severities, age of onset, and outwardly notable symptoms.  The narrowest definition we could find on the CDC website, is “ASDs are a group of developmental disabilities that can cause significant social, communication and behavioral challenges.”  How’s that for broad?

Why does this matter?  Because the rates of autism are going up.  How much?  We’re not sure.  The CDC has created a campaign called “Learn the Signs. Act Early.”  This is an active effort to screen every child so that they will be eligible for services.  Currently, 1 in 88 children is being diagnosed with ASD. That’s more than 1.1% of the population.  

But what does a diagnosis of ASD actually mean?  Our current ASD diagnosis is just as broad and non-specific as when people used to be diagnosed as having “a fever.”  Malaria, a raging staph infection, and heat stroke can all cause a fever.  Any fever can be brought down with an ice bath, but that only treats the symptom.  The ice bath may cure the heat stroke patient, but will only offer temporary benefit to the other patients.  The patient with the staph infection might be cured with a specific antibiotic, but it’s hard to research antibiotic efficacy if some of patients in your fever study actually have heat stroke.  We encounter similar problems when researching autism treatments.  Various treatments provide varying benefit to various individuals and we can neither predict nor understand why. 
Over the last fifteen years, there has been an explosion in autism research.  This is largely thanks to the dedicated efforts of parents who have tirelessly advocated for their own children.  With the CDC joining the effort, autism research is getting much needed funding and attention.  More importantly, we’re becoming increasingly open-minded about what questions we ask.  Is autism genetic?  A response to environmental factors?  A misdiagnosed brain injury?  A misdiagnosed allergy?  A persistent infection in the gut?  A problem with the human microbiome?  An aspect of human diversity?  

All these uncertainties are a normal part of the ongoing, scientific process.   We’ve currently housed a wide continuum of conditions under the term Autism Spectrum Disorder, but this is only a temporary solution.  In the years to come, through rigorous research and with a little luck, we will expand our understanding and refine our definitions.  Hopefully this will also lead to effective treatment and prevention options.  

Of course money, liability, and politics complicate everything.  This will be the focus of our next article.  

And now...many appreciations to Cherry Champagne for her willingness to join the conversation with her recent article, Rubella Epidemic of 1964-65, found in the November 21st issue of The Loop.

Stories matter.  Whether told, sung, written, or shown, stories inform our worldview in myriad ways.  Cherry’s story reminds us of many things.  That life should be treasured.  That severe disabilities can be tragic, but humor and curiosity can exist side-by-side with the struggles.  That parents suffer when their child’s potential is crippled, and a life is cut short.  Stories like Cherry’s serve as cautionary tales, urging us to learn from the past.  

The trouble with anecdotal stories, however, is that there are many of them, they frequently contradict one another, they are usually infused with strong emotions, and they are not subjected to rigorous scientific analysis before they are persuasively presented to an audience.  There is value in Daphne’s story.  But, if you are in the process of making a medical choice for your family, you need more than a story that pulls at your heartstrings and influences your decision in one specific direction.  You need science.  Cherry’s story about Daphne is human, real, powerful, and moving...but it is not science.

What makes science different from stories?  Simply put, science is a form of evaluation which avoids the common pitfalls of confirmation bias and preferred outcomes, allowing us to find answers that reflect data rather than our emotional expectations.  Our gut can be right.  It can also be dead wrong.  Science, like all human endeavors, is an imperfect tool.  History shows us we will err along the way, repeatedly.  However, it is still our best tool for non-biased evaluation of complex medical issues.

As you consider your medical decisions, make space for a variety of stories in your process.  Note family medical history and pay attention to the unique aspects of your community.  Talk with your family doctor.  Consider your family’s willingness and ability to use the various tools available to protect self and community.  All these factors need to be taken into account in order to make the best decision for your child and your community.