Advice to Parents of Newly Diagnosed Children on the Autism Spectrum

It has been nearly a decade now since my son was given a diagnosis of Autism.  And like Jerry Garcia might say, "What a long strange trip it has been."   When my son was baby in my arms I could have never predicted the journey we would take together as mother and son. 

I have flashbacks to when he was a toddler with golden curls and an impish grin.  My son's first word was "GO" which he would chant from the confines of his crib in the middle of the night.  It was an appropriate word for him as his body was in constant motion.  He was also a little escape artist.  I remember the first time we lost sight of him in a store.  My husband, my older son, and I split up to find him.  After several minutes (it seemed like hours) of frantic searching, we found Max happy and immersed in playing with the automatic doors at the entrance of the store.  He was oblivious to our worry.

Then there were the times when he would escape from our house when it grew dark.  He would dart out carrying a picnic basket.  Why?  He wanted to feed the dinosaurs he knew lived on the moon.  There was no persuading him differently.  We soon put multiple latches and locks on all the doors.  But Max would always figure out ways to unlock any mechanical device.  Houdini had nothing on him.

Along with dealing with a child who liked to take off unannounced, there were many other challenges in store. Toilet training was yet another hurdle to face.  I have one recollection of running after my naked son with a potty chair as he taunted that he would pee on the floor.   We also had to contend with issues of motor planning. For example, I had to teach my son how to sip from a straw or blow bubbles as he lacked the motor coordination to do so.  Communication proved to be one of the biggest challenges for my Max.   We had to teach him the rudiments of language as though he were a foreigner who was visiting here for the first time.  Max would use words but not for the purpose of relating or connecting to another human being.  My Max was well over five years old when I finally heard him call for me by name, "Mommy."  It was a huge milestone that other parents get to take for granted.  It seemed nothing would come easy for my son.

We also have witnessed many obsessions or passions as I would rather call them.  Dinosaurs, trains, and churches still excite him to this day.   But early on my son's passions revolved around repetitive motor movements.  Max would be thrilled by pulling up and down blinds, turning on and off lights and opening and slamming doors.  In fact, Max demonstrated these early rituals when we first had him evaluated.

We began by taking Max to see a speech pathologist.  At that time I wondered if Max had a hearing problem because he wouldn't respond to his name.  The speech therapist sat across from Max at a little wooden table.  She began to hold up flashcards of objects for him to identify.  Max, totally uninterested, leapt away from the table to the blinds which he pulled up and down repeatedly.  The speech therapist called his name.  Max never looked back towards the therapist.  It was as though she did not exist to him.  I remember feeling my heart sink.  I then turned to the therapist and asked, "Could any of what you are seeing today be caused by a hearing loss?"  As soon as the words escaped my lips I already knew the answer.  A silent shaking of her head told me all I needed to know.