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!

Sunday, May 8, 2011

A Change of Paradigm

I was first introduced to autism about 16 years ago when I took a job as an ABA therapist.  It seemed like an interesting enough thing to do- I had no idea that the experience that I gained over the 5 years that I worked with kids with autism would end up being so personally relevant, and so painfully ironic.  It's not the specific skills that I learned that have been helpful- my perspective about ABA has changed over time and I have chosen not to use it with Roo.  What I have found helpful is what I learned on a more philosophical level.  I learned that kids can and do recover.  I learned that even a seemingly small improvement in abilities can have a profound change in the quality of life of a person with autism.  I developed an intimate familiarity with autism that allowed me to see past the strikingly different behaviors that lead so many people to view people with autism as so fundamentally alien to see them instead as truly whole people who are more like the rest of us than not.

However, there is one very fundamental way that my perspective of autism has changed dramatically.  Central to the ABA approach is the idea that autism is a deficit of skills that need to be taught.  As I learned more about the biological side of autism, I saw this in terms of injury that limited the person's ability to learn "naturally" from his or her environment the way that neurotypical children do.  I saw the biological underlying causes of autism as resulting in skill deficit.  However, there have been times that Roo has demonstrated new abilities so quickly after introducing a new intervention, such as anti-viral therapy, that the old model just didn't make sense.  How could he have learned so much language so suddenly?  I have now come to see the biological aspects of autism not as causing deficits in learning or abilities, but rather as suppressing abilities that are there.  This is the only explanation that fits my observations.

The speed with which Roo began exhibiting such advanced social abilities after beginning the GAPS diet was simply unbelievable.  Once I made this paradigm shift, it suddenly became obvious that his anxiety had been so intense that it had suppressed abilities that he had already had.  Once the anxiety was lessened he was free to let his social side shine.  I felt so sad wondering how long these abilities had sat latent in him.  It's almost overwhelming to think of the potential that is hidden inside so many of our kids, what they would be capable of if we removed the barriers that keep these abilities hidden.  I have been struggling to find a way to articulate this paradigm shift, thinking that I am alone in this idea, when I just came across the synopsis for Martha Herbert's presentation at the upcoming AutismOne conference later this month.  Here is a quote from it:

"Physiological research and observations are increasingly contradicting the conventional view that autism is a purely genetic and hardwired set of deficits. Systemic and brain metabolic and immune changes, regression, transient and persistent improvement, and remarkable brilliance even in some who can't talk, all suggest that "autism" may arise from an interacting web of physiological problems that create obstruction of function or obstruction of expression rather than deficient capability. "

I want to repeat that last part, because it says what I've wanted to say so perfectly- "suggest that "autism" may arise from an interacting web of physiological problems that create obstruction of function or obstruction of expression rather than deficient capability. "  Thank you Martha.  It is so much harder to write off our kids when you see them that way.