Thursday, December 15, 2011

Theory, Data and Instinct… 3 is not a crowd

The role of each as we help our fellow MAN (not to mention  our children on the Spectrum)
Let me just say I am irritated.  It all started because of facebook ( imagine that!) A friend on facebook posted this article-
and this comment is what sparked this blog post-
"However, oxygen isn’t officially recommended for treating head injuries. And military leaders say they aren’t going to rush to use it for that purpose before it’s vetted."
“We need to base therapies on objective clinical data that cannot be influenced by opinions of people who have benefited,” former Navy Surgeon General Vice Adm. Adam Robinson told Congress in March.
Seriously?   Notice the world officially.  Notice the word Vetted.  Hyperbaric oxygen therapy has been proven to be effective within many conditions, including stroke, cancer and radiation victims.  Lets see,  a stroke impairs neurology…cancer and radiation breaks down the immune system..yet migrains and nerve damage,  we need to see more data?!?!?…which brings me to this article title.  Theory…data…and instinct.  Are we really that paralysed when it comes to common sense?  Here you have our soldiers who have given their service to our country,  wanting relief from this therapy.  Then you have some leaders in the military give the official position that the benefits are not official or vetted ( evaluated).  Notice nowhere in the article do you read that the leaders are like, wow, the theory is sound because the data is sound for other conditions that are related to what you are going through, and more studies are under way… lets help who we can NOW...we do not want you needlessly suffering!  I guess in a better world that would really happen.
When will people who really believe in waiting ( disregarding theory and instinct) understand the stakes?  IS it because it is not them!? Their mother, their child?! Probably,  as I can relate that my thinking IMPROVED once I had to dig deeper to help my children.  Does this general really think it is ok to let these great men and woman suffer as they wait for more official  DATA?  In no other field does logic work this way.  Lets look at  cancer for example, patients are lined up for clinical trials…theory with no data yet.  What have we as a society come too?  IS logic an afterthought?!!    This heavy on data, light on theory mindset needs to end!!  Let face it,  it we use the practice of theory as the framework and data as complimentary, imagine the lives saved, and helped.  Imagine if the makers of cigarettes used theory when making their product??  Common sense tells us blowing smoke in your lungs can t be good!  Look how long that took to reverse !!  Yet, our soldiers need relieve and the data game is being played. 
So what is the comparison between Theory and Data? And where does instinct fall in??  Theory should be the framework, and data is the method that measures the progress of that theory.  Considering data is always years behind actual theories, isn’t it just cruel to say that even though a firm theory is in place to the effectiveness along with preliminary data, we need to wait for empirical Data?  It reminds me of studies coming out now telling us things we already know…. Again years after people were dying from cancer from smoking…oh a study comes out saying smoking causes cancer.  Duh.   Yet,  before we help people with proven therapies,  we need to make sure they “work”. Obviously they do…by single case studies of these men and woman…  Sadly, most intelligent people have caught on that  the politics of science ( not science itself) is a big mess and  certainly when it comes to helping our fellow man or our children,  we are not going to sit around and wait for science to catch up to theory, especially since  other studies that contradict the first studies will come out and then a bunch of guys will sit around and say,  lets do a third study.  Don’t get me wrong,  research and data is important…but data is also subjective and only a part of the puzzle!!!
In my own journey with my 2 sons  and Autism, I have gone back and forth with this topic.
Without going into a huge amount of detail…when deciding what was going to help my own children when I first received the Diagnosis of Autism, I turned to data.  I was fresh faced na├»ve and had some pretty strict guidelines for the route I was going to take for my own children.  Within those few years though,  something happened…and I did not know it then but it would turn my life upside down( not to mention my 2 boys lives!)  But wait  I am getting ahead of myself…
Based on the *data*ONLY,  I chose an intervention for Autism.  When I was looking at options the professionals in this therapy were claiming, “ the only intervention with data behind it” and of course as a parent desperate for answers,  I clung to what * people were saying* to help me in my journey.  Like so many of us, as we gain years of experience in our journey,  we learn a lot…and what I always hope to do is pass on some of this for anyone to mull over as they make their decisions for their family!
This post though,  is really about what took me to the next level.  And that is…understanding why theory is crucial in understanding HOW to help your child with Autism
I believe for me personally, being data driven with how I chose to help my two sons, crippled me in not having a structure on an overall program for my kids. Theory provides the framework for structure..and I honestly knew nothing about the theory behind the intervention I was doing with my then 6 and 2 year old..I was just told that this is what you do with children with Autism, and that studies show it is effective.
See here is the thing…that was fine by me,  until my then 3 year old was making NO progress with all the help he was receiving!  … Tears and more tears….as the doctors words kept ringing in my ears, Severe infantile Autism, he’ll never talk, institutionalize him, etc etc.  This changed the game for me, and because of this game changer, my son, who is 10 now, does not have those core deficits of Autism!  How did he get there?  With a cutting edge therapy that at the time was a new kid on the block.  I made a decision to drive a few states away to attend a conference, listened to THEORY,  and from that theory understood what was lacking in my sons program that was desperately needed!  Came home and started to apply some of the theoretical strategies, and …a huge difference.  This was almost 7 years ago.  So much has happened in the field of Autism since then….the understanding of what is helpful, what the DATA actually says for long term results ( instead of short term skills) and the choice that we as parents should be able to make accordingly with our children.  Understanding theory behind this developmental approach made me look at the *theory* behind behaviorism/conditioning ( ABA/the first therapy we used and left)…and  I encourage you to look up skinner and Pavlov…their theories..their goals for children if you are a parent with a child on the spectrum.  Compare those men’s theories with  Vygotsky, and piaget.( More of the background towards RDI, Relationship development intervention)
BUT let me get to my point!  All these men…and theories..they all have a place in history.  This tug of war between implementing something that works  ( according to preliminary data or waiting until there is sufficient empirical * data* does not take into account PEOPLE!  Yes,  if I LISTENED to all who told me there was no data supporting my choice of intervention years ago ( switching from ABA to RDI),  even though there were preliminary studies and theory, my two children would be very different today.   The Data that I was given for ABA,  is data that is short term studies for skills, is fine for skills, but I want a thinking, social child...and now data shows conditioning is ineffective in long term success of social understanding.  THIS is why it is crucial to look at theory as the framework, Listen to your instinct,  and use data as the complimentary method to pinpoint specific targets within theory.
I really should not be surprised by this utter lack of sense when ignoring theory and instinct when it comes to addressing injuries.  What I am surprised at is that any leader can watch their *men* suffer and say, sorry,  there is not *enough* “Official” data.
I have dealt with this before with an agency regarding Autism…to which I wrote this email ( slightly changed to create a post from it)

 I learned a huge lesson these past 8 years…data will catch up to theory…but my children were too precious to wait…with valuable time lost if I had. My intuition told me my kids were worth it!!  It would not be the first time our kids showed us that the data is secondary!!  A few science driven doctors told me the poor prognosis for my sons...well,  they were wrong.  I am not alone.  Many in the community of Autism know that cutting edge therapies and bio medical treatments are effective for our children...and we will not wait to help them. 

In this same aspect, as I relate the article I read…Aren’t the men and woman in our military deserving of effective interventions that is based on theory and preliminary data!?  Time is too short to wait for them too!!
Kathy