I am as cold as ice

It struck me the other day when posting on facebook - how much a part of Zach's autism am I?

In recognition of "April is Autism Awareness Month", I have decided to assault my many friends with facts about autism to drive them to the point of unfriending me.  (By the way - when did friend become a verb?)  Video killed the radio star, and email/facebook/texting/twitting, I mean tweeting, killed the little grammar we had left in American society.   In my Facebook posts, I have posted things about prevalence rates and gender differences.  Then I posted about the original theories of autism, namely "Refrigerator Mother" syndrome. 

First, I felt a sadness for all those mothers who loved their children so much, were desperately seeking help only to be told it was their own fault.  Holy crow.  Can you imagine?  I mean seriously, this would likely have been the end of me.  Blame my genes, but my deliberate or involuntary actions?   All you mothers out there, with children of special needs or not, think about being blamed for your children's vices.  How come this theory lasted so long and why was it so easy for us to believe in?

A little background for those who didn't see my facebook post:

From the 1950s though the 1970s, the prevailing medical belief was that autism resulted from inadequate parenting. "Experts" blamed autism specifically on a maternal lack of affection. (A theory that would endure well into the 1990s) This theory is still held by those who believe in "psychogenic disease" that associate mental disease with emotional conflict.

The term "refrigerator mother" was coined by Leo Kanner, an early autism researcher. Kanner, and a few predecessors including Freud, noticed that parents appeared to be cold of children with what would now be called autism, thus blamed the bonding thing.  I kind of want to smack the guy, for obvious reasons, but I also want to thank him for recognizing the disorder was different than the previously believed mental illness/retardation mix it was attributed to. 

Of all the circumstances that Zach's autism has brought to us, I realize that the dichotomy of human behavior is the most frequent theme.  There is good and bad in everyone; in our typical kids, in our ASD kids, in people in general.  The tilting point, more often than not, a balance, is what makes the difference in whether that person does more harm than good in this world.  So some people would say I should be pissed at this Kanner dude, whom I have never met, and who has likely caused some harm in his initial observations of these poor mothers, although not me specifically. 

What exactly did Dr. Kanner observe?  Was it that Mom didn't smile or Dad didn't feel the need to have idle banter about sports amidst the time they spent asking for help?  May it have been that Mom and/or Dad might have the same disorder?  Anyone who has a child with such a disorder isn't exactly going to be cracking jokes and loving life when trying to get help, any empathy while doing the analysis? (Empathy/doctors: please discuss.)  But it isn't the theory that bothers me,  it's the fact that so many people stood aside complacent about the theory.  It was so easy for us to blame the parents.

A responder to my facebook post wrote something I found salient:

Such findings always strike me as further proof that people never really give up on clinging to superstition. When superstition falls out of favor they call it divine retribution. When that falls from grace they get science to provide the justification. People want to blame someone because they don't want to believe that such things could happen to them. Diseases and conditions of the mind seem most at risk for such persecution.

I read an article about the Mommy Mafia on cnn.com recently and realized, that us moms can be brutal to one another about passing judgment on mothering abilities.  Why is it so easy for us to do this?  I can remember with Sophia, our lovely "high spirited" daughter, having friends whose children were more "appropriate" smile at me and frequently pass a word of advice on what I could be doing better.  When several of these parents went on to have other children more "spirited" like Sophia, I couldn't help but smile to myself.  And yes, I occasionally rubbed it in a bit.

Nurture and nature.  We just love to blame some things on nurture that are nature.  And vice versa.  Sometimes we want to accept the nature part of things to the point of lack of responsibility.  We just do not want to believe we can make a difference with the circumstances presented to us. However, sometimes we don't know how to or are too worn out, either way: we need help.

My behavioral approach to Zach supports this theory.  It does seem to say that my actions with my son can make a difference with his behavior.  They did not cause his behavior's intrinsic nature.  I try to work with him, but I am no specialist or expert in this. I learn, people tell me I am "so smart" in fact about all this, but it is a lot of work, I get tired.  I need help.  I am not responsible for the innate circumstance we have in our life, it could have happened (and is with current incidence rates of 1out of 91 children) to anyone.  I see others who take different approaches, I wonder what guided them down their paths to their decisions.  I know a few things about them for sure: they care, they try, and they are tired.  No chilling appliance parents here. 

Thank you Dr. Kanner for realizing there was something more to this than straight mental illness.  Thank you Dr. Kanner for realizing some of these children were cognitively capable.  Thank you Dr. Kanner for giving a theory that people should have contemplated and criticized more readily.  Shame on the rest of us for wanting to believe this was something that could never have happened to us and that there is nothing we can do to change outcomes.