Spectrum

I like my bubble.  Not talking treasure chest carrying an oxygenator like in Finding Nemo, but rather my personal space.  I expect a three foot radius of air around me in all directions.  I have to mentally talk myself through hugs.  In fact, it wasn’t until I lived with a particularly ‘huggy’ group in medical school that I really hugged at all.  (Shoutout to PRS: DK Fox, Kaplan, Gid, Kale and Dawn).  The anxiety I felt then, and often still do, when someone gives you the nonverbal sign that says, “hey, hug me” is nauseating.  I’m also a counter.  Steps.  Chews.  It’s natural for me to count and ‘balance’ antything I can control.  I literally change my stride length based on the surface and any “cracks”.  Sunflower seeds have to alternate between sides of my mouth.  Obviously, I'm pretty weird, and truthfully these idiosyncrasies are just the tip of the iceberg.   

I think people exist on a spectrum of “neuro atypical”.  Most can either hide or disguise their idiosyncrasies that don't "fit in".  After all, behavior is all relative and cultural.  What one person sees as abnormal another culture may revere.  Sometimes I feel like the U.S. culture is quick to label something a disorder when it is just who someone is.  I’m by no means trying to diminish the difficulty children with autism or even ADHD have in our culture.  But as a physician I can say that I’ve seen the spectrum of behavior that can fall under these diagnoses.  Some children have extreme difficulty integrating into the typical U.S. culture and often end up in behavioral camps or group homes.  While others integrate well, become professionals, raise families, and live the “American Dream.” 

But how does that work in Haiti?  It was another morning clinic working in Gran Bois with John and a mom brought in her undersized 18-month old boy.  Chief complaint: “Malnourishmant”.  He was recently seen and diagnosed with malnutrition and told to return to the clinic when he could be enrolled in the Medika Mamba program.  So, surprisingly enough, here they are for follow-up. 

It didn’t take long to see that there might be something else at play here.  His eyes were very focused as they examined the room.  He did not make eye contact with me, likely the “strangest” thing he’s seen in his life.  His mother placed him in a seated position on the exam table and there he sat.  No excess movement.  No attempts to climb down.  No cries.  Nothing.  No fear.  Unquestioning.  He spent another few moments looking around the room and as I started with my normal questions, I caught a behavior I have never seen in Haiti.  He started rocking.  Rhythmically.  Forwards and backwards. 

“Madame, eske li pale?”  I ask her if her child speaks.  “No, li pa pale.”  No, he doesn’t.  Never?  No words?  At 18 months?  Admittedly I do not have the child development scales memorized.  I never did and likely never will.  And how applicable are the U.S. scales to Haiti?  I have no idea.  I certainly have never seen independent research verifying it.  But generally, humans develop biologically.  Independent of their surroundings barring chronic stress or malnutrition.  And even then most children meet other milestones at roughly the same pace. 

No social smile.  No fear of strangers.  He let me pick him up, but his eyes continued to dart around.  Dr. Leo tried to use a tuning fork to get a reaction out of him.  Nothing.  Maybe he has a congenital deafness?  That would explain the speech delay, but after setting him down he immediately set back into the rocking motion…  That one is tough to explain.

Poor kid.  I feel for him.  I feel for his mom.   I can’t imagine how it would be to raise a child if they do not reciprocate emotions or love in the “typical” way.  I think that is a large part of the frustration with raising a child with autism.  I also can’t fathom a person aversive to physical contact and connectedness living in Haiti.  This culture is nothing but in your personal space.  Granted, I’m a 6’4” white dude, but you can’t take a walk down the road without several kids following you and walking with you.  Shared transportation.  Hugs.  Physical touch.  Holding hands amongst friends.  It’s a culture that seems to feed off connectedness.  It’s a daily struggle for me not to be overwhelmed. 

I think the hardest thing in this culture will be trying to “explain” the difference.  I can just see friends asking the mom, “Why is he ‘different’?”  I suspect demons and curses may be blamed.  There certainly aren’t vaccines to attribute the difference to.  Will the family pursue “traditional healers” to try and “fix” their son?  I’ve certainly been wrong many times in my life, but I have a hard time picturing how some of the ‘treatments’ employed by the traditional healers would help. 

This kid needs therapy.  He needs specialists to help him with his speech.  He may need specialists to help him understand what his particular “differences” are and then methods of coping with societal expectations of him.  He needs patience and understanding.  Comfort.  Encouragement.  And I honestly don’t know that he will receive those in Haiti.  For a brief moment, as Dr. Leo was explaining to the mom that she needed to eventually take the child to a specialist in Port-au-Prince, I thought about the adoption process and how to get this child to the States.  But this special child deserves more than to be whisked away.  He deserves to be with his loving family, amongst his people, and for us to figure out how to serve him.