Accepting the Autism

Three years ago, my family traveled to Children's Hospital.  It was the final stop on our journey, our quest to find an answer.  Why didn't my almost-three-year-old son talk?  I knew what they were thinking, the direction the other experts were leaning as they evaluated his speech, his motor skills, his ability to follow directions.  But I so desperately didn't want that answer.  I didn't want to hear the dreaded A-word.  I did so much research, so much preparation for our meeting with the Pediatric Neurologist.  I noted all the ways my son did not fit the descriptions (and ignored all the ways that he did).  But there we sat, in that small exam room, and that smug doctor said, "Your son has autism."  I argued with him for a while.  I presented my case.  Chris took James to the waiting room to look at the aquarium because he couldn't wait in that space any longer.  Finally, the smug doctor said, "I can tell you're very intelligent and you've read alot on this subject, but I've been doing this for 30 years and have yet to be wrong."  Oh, I wanted to smack him.  He didn't understand what he was doing to us.  He didn't understand how grave his words were.  I gathered my papers and left.

Until then, my experience with autism had been very limited: a one-time viewing of Rainman, the strange boy from my high school who flapped his hands as he walked down the hall, and Andrew, the 11 year old boy I babysat.  None of these instances reminded me of James.  For one thing, they were all verbal.  James only said a handful of words, and he hadn't added any new ones for more than 6 months.  Most of my denial rested on Andrew, the one I had the most direct interaction with.  I watched him every Saturday morning for more than a year, and I'm pretty sure he never learned my name or even noticed when I stopped coming.  He would sit, rocking, and recite the TV guide.  Rarely did anything actually happening in his general vicinity show up in his speech, nor did his tone ever fluctuate with emotion.  We never conversed.  On the other hand, my darling son, with whom I spent every day, was cuddly, affectionate, and happy to see the people he loved.  He cried whenever we left him, or if his Nana and Grandpa were headed out the door.  I never noticed him doing any odd "stereotyped" behaviors, like flapping, rocking, spinning.  Most importantly, he looked at me.  In the eye.  Sometimes he sat on my lap and we stared at each other.  The autism community has many helpful phrases, one of which is "If you've met one autistic person, then you've met one autistic person."  In other words, despite having the same diagnosis, each individual experiences it differently, unlike the time four of us had strep throat, and we all had red tonsils and took antibiotics.

My biggest fear in receiving the autism diagnosis was its permanence.  I knew enough to realize that it wouldn't go away.  It wouldn't be cured.  It would be with us forever, and there was no way to predict how severely it would affect not just James, but our entire family.  I had more concerns when I read the doctor's folder of information a few days after our visit.  People with autism do not feel empathy.  They lack imagination.  They can't show emotion.  If there were ever to be a basic list of what I want for my children, at the very top would be that they would feel love and would care for not just themselves, but the people around them.  That they would know the wonder and joy of the human imagination, where there are no limits.  And these pamphlets threatened to prevent my darling child from experiencing any of that.

So for a while, I struggled.  We followed the experts' advice: we enrolled James in an early intervention preschool, and that summer we began private speech therapy.  I kept hoping that somewhere along the way, someone would correct this mistake.  They would look at James, really engage him, and say incredulously, "Your son doesn't have autism!  He's just ----."  And whatever that ---- was would have a clear and simple solution.  If he would just start talking, he could explain to them all how wrong they were!  I became more intentional at home, reading more books and using more words to describe what we were doing.  I made flash cards and posters.  James wasn't too interested; I usually ended up with just 1 year old Winston filling the place his older brother had vacated.  I also spent nights beating myself up.  I just couldn't imagine that this wasn't all the result of some terrible failure of mine.  I would go over and over my pregnancy, my delivery, his first few years.  What could I have done so wrong that my child didn't develop the way all his peers seemed to?

The only thing that seemed to help me face what I was denying was time.  As the days and months and years went by, and James met more and more people, and none of them ever said those magnificent words.  As I spent more and more time finding out about Autism, meeting other parents and children who faced it.  It became harder and harder to ignore what was there.  My son is autistic.

The truly amazing thing happened once I accepted the diagnosis.  Once I said it out loud, and believed it in my heart.  That's when I started to let myself off the hook.  That's when I started to look for the hidden blessings in this new reality, the abilities in my son's disability.  And that's when I realized that James isn't Autism.  James is a boy who loves to play Angry Birds, whether on the iPhone, with his plush birds and some blocks, or those tiny rubber Angry Birds.  James is an older brother who gets territorial when the younger ones try to mess up his stuff, who kisses the baby when he cries, who hugs fiercely when he gets home from school after being away from them all day.  James is an affectionate and empathetic person, who gets distressed when others are upset, who smiles expectantly and wants to know the joke when people around him laugh, who gives kisses and high fives to the people he knows well.  And most importantly, he's my son, my cuddle buddy, my special boy.  I couldn't separate him from Autism any more than I could make him be outgoing, or suddenly make him Asian.  But all of his characteristics and personality and neurological differences add up to the awesome person who is my James.

Tomorrow morning, we're heading back to Children's.  James will be evaluated to be given an official "diagnosis", a place on the spectrum.  I'm not fighting the experts this time, I'm not even hoping someone will say, "He's not autistic!" (because, Good Lord, what do we do with that?!)  But I also don't really care too much what the results say.  If his school, his doctors, his teachers and therapists need to classify him to make their jobs easier, if they need to call it something, then so be it.  But to me, he was, is, and will always be my son, and I will call him James.