Redefining Autism

Redefining autism is looking at autism through the lens of the 21st century, looking at what current research is telling us about autism and, more importantly, the implications for intervention.

At the RDIConnect Fall Conference 2015, Dr. Gutstein spoke about the guiding relationship as he has from the origins of RDI.  Dr. Gutstein looks at kids with autism and sees potential, sees possibility, sees hope. We know kids with autism fall off the typical developmental pathway and RDI asks, “How do we put them back on that path?”

The most important ingredient is the parent - child relationship or guiding relationship to be restored.  And that’s great news for parents because we CAN do that.  It may not be easy but we parents are our own best resource, along with a guide to help.  A guide in the form of a RDI Consultant, someone to navigate us, partner with us, show us the way.  Help us find the path.

Current research is catching up with what Dr. Gutstein has been saying for years.   In a recent study Hobson et. al* concluded that improved parent-child interactions decrease the severity of autism.  Countless RDI families know this to be true, I am one of them.

Where does redefining autism come in?  

Dr Gutsten continued to explain that kids on the spectrum have lost what he calls mastery motivation, a desire to seek out growth, a desire to seek out challenge, a desire to grow and learn from their parent guides. Think of any typical child playing peek-a-boo.  The child is motivated, thrilled by variations, and excited by the dynamic nature of this simple game.
Parents have an innate desire to guide their child’s growth and development.  

But, tragically at the same time parents are seeking to guide their child, the child with autism is withdrawing, clinging to sameness, resistant to change, urgently trying to maintain homeostasis which, of course, is impossible to do in our ever changing dynamic world.

This mismatch is what Dr Gutstein believes leads to the continuing spiral down the wrong path for our kids with autism. As parents continue to push their child, their child just withdraws further.  Often times turning to ritualistic behaviors for comfort in a confusing world.

What is a parent to do?
As a parent, I believe just knowing this information is powerful.
I remember trying to do just that, reach out to my son with autism to guide him, show him new things, challenge him. 

And just as Dr. Gutstein explained at the Fall Conference my son continued to withdraw. His desire for mastery motivation was not activated.  He withdrew further and further. I knew I was losing him, but didn't know what to do about it. 

Images of him swinging on the swing for hours, jumping on the trampoline, which became a permanent fixture in our living room, and insistence on sameness are a distant memory.
I remember one day sitting in the dinning room having dinner conversation and seeing Jake jumping away and thinking “how can I let this be my normal?”

Luckily, I found RDI when Jake was 9 years old and we slowly made our way back to normalcy.  We regained our guiding role as parents and slowly Jake began engaging with us and the world around him. And this was only the beginning.

Next steps: Dynamic Intelligence Curriculum

At age 16 we continued our journey with RDI and the Dynamic Intelligence Curriculum.  The Dynamic Intelligence Curriculum is for kids who have established the guiding relationship with their parent or guide and are ready to begin taking more responsibility for their growth and self development.  

The main goal of the DI Curriculum is to create an organized system of stored knowledge about one’s self.  An external representation of knowledge that you can draw from when planning and preparing for future challenges.  The goal is to learn about yourself in relation to the world and your relationship with other people in your world in a way that will benefit you in the future, to make you a more competent, successful person.

It sounds complicated but it isn’t.  It actually is an essential tool for all people on the autism spectrum as a universal deficit among people on the spectrum is their inability to learn from past experiences and apply this information to future situations.

No wonder my son would say, “Life is hard for me”,  “I should have known that”, “Why am I so stupid?”  He was lost and confused and he knew it, but he didn’t know what to do about it, until now.

Now he routinely saves information from experiences he has.  He stores the information, categories it, matches it with similar experiences, updates this knowledge and plans for upcoming challenges and situations.  In a word, he is EMPOWERED.  And I must admit, it is awesome to see!

To me that is redefining autism in a nutshell: 
Empowering parents! 
Empowering kids!  
Becoming the best person they can be!


*The Relation between Severity of Autism and Caregiver-Child Interaction: a Study in the Context of Relationship Development Intervention
Jessica A. Hobson , Laura Tarver, Nicole Beurkens, R. Peter Hobson

 Follow Jake's Journey