This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Friday, June 4, 2010

The Semantics of Autism and the "Buffet Analogy"

There is a great deal of confusion about autism in the media and in the general population, which makes sense since most people get all of their information about these things from the media in the first place.  We hear that it may be on the rise, but that this could just be the experts doing a better job of identifying it.  Or it could be that more parents are seeking services than in the past.  We hear that this could be a result of changes in the definition of autism.  It is often implied that more and more people, with milder and milder symptoms, are being included on this "spectrum".  We hear both that autism is a spectrum disorder- meaning that people with autism lie on a spectrum from "high functioning" to "low functioning"- but at the same time we hear that autism is part of a larger spectrum.

Even within the world of autism some experts equate Asperger's Syndrome with High Functioning Autism while others are careful to distinguish the two.  We hear that Pervasive Developmental Disorder is on the autism spectrum, but then we hear that autism is on the Spectrum of Pervasive Developmental Disorders.  Autism itself can be referred to as "full criteria autism", "Autistic Disorder", "classic autism", "Kanner autism",  "type-1 autism", and more.  Autism can be either a medical diagnosis or an educational diagnosis.  Is the widespread confusion any wonder given the current state of semantic affairs?

When the experts talk about autism it is presented as something clearly defined.  We are presented with an image of a clear and tight system, governed by the DSM criteria, by which accurate, reliable, and meaningful diagnoses are made.  While they may not know what causes it (although they are very sure that vaccines don't), they seem very confident in their ability to recognize it.  The semantic confusion belies the fact that this diagnostic system is no more than the beginnings of an attempt by humans to wrap their brains around something exceedingly complex and varied (an attempt by committee no less, which reminds me of the joke that a camel is a horse designed by committee).

Ultimately, much of the confusion results from the attempt to map a very simplistic schematic onto an exceptionally complex reality.  The concept of the spectrum is basically that we can line up everyone on it from left to right in a neat line based on the severity of their symptoms.  We start with Pervasive Developmental Disorder on the right and work our way through Asperger's to autism, going from high-functioning to low functioning.  Aside from the obvious issue that this leaves out those with Rhett Syndrome and Childhood Disintegrative Disorder, the whole idea of lining people up in terms of severity becomes laughable as soon as you become familiar with actual people on the spectrum.  The sheer variety of symptoms and traits involved, which manifest differently in quality and intensity in each person, plus the fact that everyone has their own individual mix of traits, makes the idea of linearity utterly ridiculous.

Instead, I propose a new metaphor to better capture the essence of what we're talking about here- a buffet.  Each person who visits the buffet serves him or herself a unique meal.  What each person has in common is that they loaded up their plate from the same offerings, but what makes each person unique is the quantities taken and the combination of dishes sampled.  Some people take a little of everything, while others may pile their plate high with just a few things.  Some may take a lot of one thing, a medium-sized helping of several other things, and a small taste of yet several other things.  The possible combinations are endless.  Looking at autism this way has another benefit as well- it focuses out attention on the specific issues facing each individual rather than making generalizations about them based on a label.  When we are able to see each person for the unique individual that they are we are best able to meet their unique needs and help them to thrive.