Wednesday, February 16, 2011

So what is 'autism', exactly?

This question has bugged me ever since we first started noticing the "red flags" in our supernova.  Unfortunately, it seems that no one actually has a hard answer to this inquiry.  At best, here's what the Columbia Dictionary has to offer: 
"Autism is a developmental disability that comes from a neurological disorder that affects the normal functioning of the brain. It is characterized by the abnormal development of communication skills, social skills, and reasoning."

Umm ... okay, that's nice and vague.  The same definition could also be applied to a whole slough of pediatric developmental disorders.  In fact, they do; hence the insertion of the term "spectrum."  The symptoms, while all falling under general categories, are fairly extensive and affect children in a manner as diverse as the personalities of the children affected.  This reality gives rise to such labels as "Asperger's Syndrome," "high-functioning autism," and "Pervasive Developmental Disorder," just to name three ... and I haven't even begun to touch on related disorders that often coincide with autism, such as Sensory Integration Disorder, Mixed Receptive-Expressive Language Disorder, and the far more common ADHD.

The labels certainly don't help those of us groping around in the dark for answers.  Case in point: our diagnostic journey.

We noticed our son was not developing linguistically as he should; and certain elements of his development seemed unbalanced.  Truth be told, we honestly didn't know what was delayed due to his capabilities versus what was simply a selective avoidance.  He showed no interest in solitary or creative play; though he loved books and puzzles (as long as someone did them with him).  He really only spoke regarding those things vitally important to him; yet he was socially very outgoing.  As we had an idea in our head as to what autism "looked like," his social nature and utter avoidance of being alone really threw us ... and his earliest doctors as well.

Finally when he was recommended for speech therapy at 3 1/2, it was his speech therapist who spotted some red flags for ASD ... but only after working with him for a month.  At the large children's hospital in our state, the speech pathologist who was an autism specialist tried to give us a "form" for autism and laid out three qualifiers:
1) disordered language
2) inconsistent eye contact
3) delayed social development

By her definition, autism was defined by the symptoms, not necessarily by the causes of the symptoms.  However, I have learned that diagnoses of autism can be as varietous as the letters behind he names of those doing the diagnosing.  
As we were referred on to the local school district for early intervention placement, we were bemused to learn that the school psychologist had a different opinion.  True to her training, she is more interested in the underlying causes of his challenges than the surface expression of them.  She immediately picked up on his socially outgoing nature and with some finality declared that this knocked him out of the autism label while agreeing that he qualified for other  parts of the spectrum.  Similarly, while the autism/speech specialist focused on his borderline OCD preference for routine, the psychologist focused on his flexibility (however reluctant) and love of novelty.
 So, while we wait on the assessment by the pediatric neurodevelopmental specialist (M.D.), I can't help but wonder if he'll have yet another opinion.

One thing to keep in mind as we scratch our heads over all these opinions is that scientific method is not foolproof.  All one can do is ask a question; formulate a hypothesis, and test that hypothesis with available evidence.  When it comes to human behavior, we are working with evidence that is inconsistent, immeasurable, and prone to misinterpretation (due to the "blind spot" or unacknowledged bias of the assessor).
Consider this: according to the Eide Institute, Autism can only be clearly diagnosed by a rather expensive brain scan.  The brain of an individual with autism "lights up" differently than a :ahem: "normal" brain.  However, the same symptoms that are shuffled under the cause of autism can also be caused by other disorders, including Sensory Integration Disorder (also known as Sensory Processing Disorder), in which the child is so overwhelmed by competing stimuli that they struggle to "filter" appropriate auditory and visual queues -- it's no wonder they seem to be avoiding your eyes or hearing only half of what you say (and responding to less).  And yet, in the case of these children (as with my son), empathy is not a weak point.  They are still very sensitive to the moods and emotions of those around them ... and in those moments when overwhelming stimuli are taken away, they exhibit enormous clarity.  Sadly, SID/SPD is one of the least recognized (yet seemingly increasingly prevalent) challenges affecting children today.  I'll admit, it was a tad frustrating when the initial specialist admitted that our son showed signs of sensory integration issues yet had no viable suggestions on how to have him assessed as such.
Meanwhile, my cousin's son walked a similar path and only recently was diagnosed with hyperlexia (as one by one, tests knocked out prior diagnoses).  My little second cousin's brain is essentially so hard-wired for "decoding" that it gets in the way of normal linguistic development.  However, for three years medical professionals had them walking the same road we are now.

I'll admit: unlike a lot of "spectrum parents", I'm really unconcerned with the cause of my son's struggles.  I have my own theories rooted in my sociobiological training -- theories that would be decidedly un-PC ... not to mention get me in trouble with  As frustrated as I am at times, I know my son's unique make-up exists for a very real purpose ... and I anticipate he will one day blow the world away.

In the meantime ... call me morbid, but I'll be interested to see how his brain lights up should the docs choose to go that route ...