Autism

This is how our 22-month-old son leaves his toys when he is finished playing.

As an educator certified in elementary and special education, I recognized signs of autism in our son when he was just eight months old.  He studied his favorite rattle by turning it over and over in his hands, looking at it from every angle, for a full 45 minutes.  We were unable to distract his attention from his toy.  The pediatrician told me that our baby had amazing focus and because he made decent eye contact, he was fine.  The early interventionists reassured me that I was accurate in noticing red flags, but with certain strategies in place we could work through it.  Despite our interventions, as the months passed the red flags increased.  I practiced using the word.  Autism.  Out of my mouth, it sounded normal.  It was my informal assessment of our son's developmental differences.

Our son's follow-up neurology appointment was on Tuesday.  We had completed everything as prescribed: five months of intensive interventions, seven therapy sessions weekly.  Physical therapy, Occupational Therapy, and Speech.  Initial evaluations and progress reports faxed in one week earlier.  A reassessment visit with more data.

Back in the little chair in the neurologist's office sat our son.  He still refused to participate in the testing.  Uninterested in the objects placed before him, he again he threw the pieces to the floor.  I mentioned to the doctor that if she sang the instructions, our son would be more apt to pay attention.  She humored me, and sing-songed, "Put the cube in the cup!" Our son looked her in the eyes, picked up the red cube, and dropped it in the cup with a clatter.

The neurologist asked us questions and listened for over an hour.  She had clearly paid very close attention, because she summed up our son in one sentence:  He is self-directed.  This is a fancy way of saying that he wants to do what he wants to do when he wants to do it.  It is difficult to engage him in anything else.  Fortunately for us, he loves letters and numbers.  We engage him with books and songs.

I was fully in parent-mode.  The doctor talked us through her findings.  She made her diagnosis.  "With the addition of all of this data I can say that he fits the clinical definition of autism.  Your son has autism."

Her words punched me in the gut and left me breathless.  I saw my son playing on the floor with his toys while the room around him blurred.  The doctor continued to speak, but I could not make out the words.  I heard my wife ask, "What are the next steps?" and something about 25 hours of weekly ABA (Applied Behavioral Analysis) therapy and my own breathing.  Suddenly we were being ushered out of her office.

"But he could be cognitively fine," I said desperately, in response to his low cognitive scores in both visits.  "Right?  He could be cognitively fine but refusing to perform?"  The doctor kindly agreed that this was likely the case.  Nothing felt real.

We meandered our way to the hospital's cafeteria for lunch.  My wife was not expecting an autism diagnosis, and was quietly processing what this would mean for the future.  I was expecting it, yet fell apart.  Receiving the news as a parent was completely different than understanding it as a professional.

Our son today is the same sweet child he was yesterday.  In that sense, nothing has changed.  Family members wrote to remind me that autism is "just a word."  While this is true, they are not realizing the enormity of what an autism diagnosis means for both our son and our family.

The neurologist told us that at a microscopic level, the cells in the brains of people with autism are arranged differently than the cells in the brains of typical people.  To us this means that autism is not something a child outgrows, like a developmental delay.  There is no sense of "catching up."  An autism diagnosis implies that our son is never going to be a typical kid.  He may be able to act like a typical kid depending on how well he progresses with his therapies, but autism is lifelong condition - his brain will always process the world differently than we do.

Society does not yet accept people with disabilities as equals.  Even if our son does develop a lot of skills and coping strategies, he will inevitably face discrimination to some degree.  


Another family member was more optimistic.  He wrote that we are all the sum of our parts and that is what makes us unique and special. This diagnosis now that it has been named is only one more part of who he is that will make him uniquely him and give him his own special take on the world.  When society as a whole understands this, autism will truly be "just a word."

In the meantime, we will do everything in our power to support, protect, and advocate for our son, who has autism.