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Saturday, December 21, 2013

A Community Conversation - Part 9

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.  

[Note:  We removed the last section of this published article about Cherry Champagne's contribution to the conversation and posted it separately, as it covers a different subject.]

“A Community Conversation About Health and Responsibility: Vaccines and Beyond” is an ongoing series written by two close friends with a passion for improving community cohesion and building respectful relationships in a diverse world.  This article was co-created by Karen Crisalli Winter and March Twisdale.   BLOG:   Email:

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Welcome to the conversation. Knowledge changes. People respond best when this truism is kept in mind. In community, March & Karen