The Autism ... Continuum?

If you were to perform a PubMed search for studies that include "visuo-spatial" and "autism", you might come up with 15 studies that indicate differences between the way autistic people process visuo-spatial stimuli versus control groups of neurotypicals. Perhaps this goes a long way towards explaining why many autistic folks - and many of their allies in academia and parenting communities - object to the use of the term "Autism Spectrum". Let me explain.

"What?" the casual observer may ask, "I didn't even realize that the use of the 'spectrum' was controversial". Well, its not really elevated to the level of controversy yet. But as the realization of the need for protection of the rights of autistic people grows, so too does the need to consider the language of the topic. And 'spectrum' is one word that deserves consideration.

Consider, for example, my first exposure to the word. This is a brief outtake of the story of the day we received our son's autism diagnosis:

After standing by while my son completed a battery of behavioral and performance-based tests, I was asked by the psychologist to take Jason downstairs for a while so whe could complete her analysis of results. After about 45 minutes, I brought him back up to the Pediatric Neurology offices for the diagnosis. She worked with me through the initial process of diagnosis, describing each diagnostic criterion and asking if I agreed. After 11 affirmative responses, she knew she had brought me to the point where I understood where she was going with this. And so she continued with a description of the Autism Spectrum - the first I had ever heard of it:
"On this third, you have Asperger's Disorder. In the middle, you have PDD-nos, and the most severely affected are in the Top Third, called Autism Disorder or Classic Autism. Your son is in the top third, probably somewhere in the middle of that segment. This means that he has less of a chance of living independently and functioning normally in society than if he were in the other two sections."
It was as if she had a special "Autism Sextant" that pinpointed precisely where he fell, at the ripe old age of 39 months, on the linear spectrum. And, being totally new to the diagnosis and having a complete void of any competing knowledge, I bought the whole line.

So this was my working knowledge of the autism spectrum - as a linear spectrum going from 'mild' to 'severe' - for maybe a year or so after my son's diagnosis. How simplistic this view now seems to me.

You see, the Autism Spectrum is not just a linear representation of behavior, with one end being the "best" and one end being the "worst". Instead, it describes a continuum of subjective experience and behavior, resulting from neurological atypicalities, which can vary significantly over the lifespan of any individual who is labelled autistic.

Notice that I have selected the word Continuuum here.
Description: Continuum theories or models explain variation as involving a gradual quantitative transition without abrupt changes or discontinuities. It can be contrasted with 'categorical' models which propose qualitatively different states.

So by viewing autism as a continuum, we can incorporate the concept of fluidity of behaviors or experiential factors, thereby creating an increased ability to understand and discuss autism issues in a more realistic fashion. At the same time, we avoid the Spectrum's push towards 'grading' behavioral presentation to the detriment of potentially diminishing the value of the individual.

Too often, productive discussion on the topic of autism is limited by term usage such as "high-functioning" or "low-functioning." You will occasionally see comments such as "Person A is just Asperger's or HFA, and therefore can't be considered alongside Person B, who is non-verbal with SIB's." And there is something to this, as everyone I think agrees that some autistic individuals' symptoms or characteristics are much more debilitating than others. But to simply compare HFA to LFA is far too simplistic. Such a view ignores tremendous variation in "clusters" of abilities and disabilities related to autism. I have read or spoken with several autistic adults, and a common theme is that "some days are better than others". Or, to put it another way, a person can appear to function at different levels at different times. I think the continuum concept captures this fluidity.

Another criticism I would offer of the linear spectrum concept is adopted from a researcher-friend of mine. She has stated (paraphrasing here) "Spectrum? Bahh. That's just something the Behaviorists cooked up to separate those they could help from those they couldn't figure out."
I think what she means by this is that allowing ourselves to label an individual as being in the lowest functioning category provides a wealth of excuses for ourselves to consider them outside the realm of "help-able".

Here's another angle, albeit somewhat Sophist by nature. Taking this idea of a Spectrum to its extreme, then at any given moment ONE PERSON is the most autistic in the world. One person is also the least autistic, and is just one person away from no longer being considered autistic. This is purely conceptual and has no pratical application other than to highlight how the Spectrum can result in a "ranking" of behavioral presentation.

I have also been part of numerous discussions on the topic of a cure where this linear spectrum concept is inadvertently interjected into the conversation. Usually the commenter will say, in reference to their efforts to provide a cure for their child's autism, "All I want to do (with treatment X or intervention Y) is to move him/her up the spectrum. Is that so wrong?" What the parent is insinuating, though probably unintentionally, is that their child's current 'level' of autistic functioning can be incrementally, quantitatively improved by degree and the progress can be tracked. This is almost never the case. Typically, when parents talk about their children's progress, it goes something like this,
Parent A: "Well, she has started talking now in single words, still isn't forming sentences. But her use of sign language is improving all the time. Unfortunately, it seems that she has a lot of anxiety since school started, and her sleep patterns are very erratic and unpredictable."
Parent B: "My son is not talking at all, and has never really had significant anxiety problems. He's always very calm, like an old soul. His fascination with airplanes is really taking over his other hobbies right now - he won't read anything but that topic. And ever since we moved out of the city, he doesn't scratch or bite his arms anymore like he used to."
In both of these examples, there is no clear delineation of improvement or regression. The changes in the kids are Fluid. They are on a Continuum.

This discussion, as do so many others, boils down in large part to the fact that we don't have a very good working definition of autism. Autism Disorder is still, from an academic standpoint, a term used to describe a set of observable symptoms. I hope the academics consider the importance of defining and endorsing a better way of describing the tremendous range of individuals that carry the label of Autism than placing them all on a linear Spectrum.