Saturday, November 12, 2011

Reevaluating Autism

We're coming up on the two-year mark of our journey into Autism.  In 2009, two very nervous and exhausted parents met with a highly-recommended developmental neuropsychologist to discuss the strange behaviors and developmental delays in their four year old child.  We were concerned and scared and tired of feeling out of control in our own home.  We were mentally and physically exhausted with the daily stress of meltdowns between every moment of endless movement and energy.  We were troubled because we couldn't communicate with our son when he was out of control (which was much of the time) and because we didn't feel like we could connect with him when he was calm.  And--having finally let go of that thin thought that he would grow out of these behaviors--we were holding on to the last thread of hope that maybe, just maybe, this would be the person who would finally see the things we were seeing in him and offer us some help.

And we were not let down in that regard.  Hours and hours of evaluations stretched over the next weeks led to a label and a reason for his behaviors.   And lots of suggestions on how to help him, and how to help ourselves as well.

But I've never been completely comfortable with the diagnosis.  When we first started this process, I researched my little heart out.  Every waking moment during the weeks of testing was spent on the computer or in the library, trying to prepare myself for whatever the doctor was going to say.  When we went into her office for that fateful meeting where she was going to tell us the diagnosis, I was pretty sure I was one step ahead of her and knew what she was going to say.  I had already self-diagnosed my boy with Sensory Processing Disorder.  When she started talking about his global delays (meaning, delays across many areas of development) with huge delays in social and communication skills, warning bells went off in my head.  These were not delays I had read about in conjunction with SPD!  After 20 minutes of telling us the results of his tests and what the different therapists on her team had observed, we finally got that label...PDD-nos.  And I drew a blank.  Nothing in my research had mentioned this!  It was several minutes of stunned processing on my part, trying to still my beating heart and the noise in my head to hear what she was still saying, when the word "autism" broke through.  I remember saying, "Wait!  He has autism?"  And she explained about the spectrum being like a bowl, with some people being at the top of the bowl on one side (low-functioning, or Classic Autism) and some being at the top of the bowl on the other side (Aspergers Syndrome), and Munchkin falling into that large area in the middle of that bowl that they called PDD-nos, meaning he had "Global Developmental Delays with Autistic Characteristics."

We went home and I immediately got back on the computer to research this.  As I read about the signs of autism, I realized with a sinking feeling that Munchkin really did display a lot of these things.  He avoided eye contact with others.  He often went into his own world and ignored everything around him.  He didn't play with toys appropriately, but preferred to line them up or to lay on the floor and move his trains back and forth in front of his face.  He obsessed about things to the point that nothing else mattered.  He would play alongside other kids but seemed oblivious to their presence, unless they interrupted his process--then he melted down or lashed out aggressively.  But for all the red flags he DID display, there were just as many that he DIDN'T.  He didn't flap his hands, or spin the wheels on his tractors, or stare at patterns and designs on things, or rock his body back and forth.  He didn't have speech delays, and talked a mile a minute!  He made eye contact with me and with his teacher at school.  He was affectionate, almost to a fault with the way he lunged his body at you for a hug and squeezed the air out of you.  And he was smart--practically a genius!  How could anything be wrong with the brain of a child who could recognize all his letters and numbers at 15 months and spell and read many words by age 2?!

But over time, the autistic behaviors became more apparent.  He didn't flap his hands, but he did spin in circles a lot.  Ok, too much to be considered normal.  He talked a mile a minute, but always about Thomas the Tank Engine.  In fact, he knew everything about Thomas, had even memorized whole episodes of the show!  And he didn't always respond to your questions, or maybe if he did, his answer didn't make sense.  Like when I asked him what he wanted to eat, and he said, ""  But when I asked again, "Do you want waffles or cereal?" he said "waffles" (which, coincidentally perhaps, were in a blue box).  He made eye contact when he initiated it, but refused to do so when you asked him too.  He did have a fascination for patterns, always watching the way the sun played across the wall, or driving his trains on the lines of the tile floor, or having to avoid the lines in the tile at school and jump from square to square.  And my little genius (for he truly was incredibly smart in many areas, testing at a 7- and 8- year old level in many higher functioning areas of the brain, like puzzle-solving and reasoning) couldn't do such basic tasks as getting himself dressed or holding a crayon to scribble.  Over time, I embraced his diagnosis and we began working with therapists and with the school district to help him overcome his delays.

There is no longer any question in my mind that my child has "autistic-like" qualities.  Here we are two years later, and he still displays many of them, though he has overcome many of them as well.  He now makes eye contact in a fairly typical way--unless he's distressed or overwhelmed in some way, in which case he avoids it still.  He still spins--a lot more than what would be considered typical, especially now that he's six--and he's actually picked up the habit of soothing himself by rocking.  He still lags a year or two behind his peers in social development.  He will play with other children now, and sometimes he even initiates it, but he doesn't have the skills that most six-year-olds have in play.  He doesn't take turns, or let others lead the activity, or allow for any variation from the rules as he understands them.  This makes it hard for him to join others in a game, because they get mad at him for being so rigid and for not playing fair.  And he doesn't have a clue why they're upset, so he just thinks they're being mean to him.  He still doesn't understand emotions or read facial cues well, but he has started making and understanding jokes in his own way.  He doesn't understand sarcasm or some of the strange idioms in our language, and he's still a very literal and visual thinker.  And he still obsesses about Thomas--though he's branched off now to Angry Birds and Hotwheels as well.

I no longer wonder if he's really autistic.  I still maintain, though, that many of his issues are more sensory-related--which definitely falls into the spectrum, but doesn't define it.  Almost all the things he does can be explained with an SPD diagnosis--but all of them can be explained by autism too.  Ultimately, it doesn't matter.  Having an autism diagnosis allows him to receive services through the school district, which, at this time in our life, is the only therapy we can afford to give him.  It also allows insurance to cover at least some of his therapies when we do pick them up again, because they'll allow for Occupational and Speech Therapy under the autism category, but they won't even recognize SPD.

I do wonder where we'll be next year, when he'll have to be reevaluated in order to continue services at school.  Will he still be "Autistic-Like" enough to qualify?  Will he keep his diagnosis or will it change?  Will he ever reach a point where he can be considered "neurotypical" and we no longer deal with this?  I wonder this one a lot--I've accepted that this is our son's life, that he will always have Autism and will always be working at the things that his brain doesn't want to do.  But I wonder sometimes if a day will come when his delays will be gone and his development will catch up to his peers.  It's a possibility that I don't put my hope in for fear of disappointment if I do, but also one that I can't quite give up on.

Like I said: Ultimately, it doesn't matter.  Munchkin is who he is, regardless of what we label it.  The label doesn't define him--he defines it.  Him, and all the other kids out there who are on the Spectrum, wherever they lie in that bowl.

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