Diagnostic Limbo

Saturday, October 30, 2010

Things have been so hectic with work in recent months that this week snuck up on me.  I've been waiting 6 long months for Friday, November 5th.  It's Bear's 6 month follow up with  his pediatric neurologist.   The day we're supposed to find out if he's autistic.

The first pediatric neurologist - the same one who pretended I was not talking when I brought up SPD and wouldn't acknowledge it as a diagnosis from the EI team - literally laughed when we asked about autism.  Our family sat huddled in the little appointment room, me clutching the autism warning signs checklist trying to make the doctor listen to me while Wonderful Husband tried to keep Bear distracted with goldfish crackers. 

The autism checklist my daycare teacher BFF brought because she was worried.  The autism checklist our pediatrician agreed applied enough that we should consult a pediatric neurologist.

Hell, the austism checklist the stranger at the park practically suggested I get my hands on when commenting on Bear's unusual behavior.

The doctor. Laughed.  At me.

He even waved his hand dismissively while saying "he's not autistic."  And that was that.  He was done with us.  I guess Bear's real problems weren't billable enough.  Which was fine, because I was certainly done with him.

Fast forward to spring 2010, the first visit after a 5 month waiting list for our shiny new, best in the area pediatric neurologist.

Who, after spending quite a long time with us asking relevant questions and validating all of our concerns, blew me away when he said it was not possible to rule out autism yet.

Which I knew. Really, I did. But to hear it out loud from the good doctor was surprisingly hard.

Is there a diagnostic code for "autism: wait and see?"

Bottom line, his SPD and his dramatic social delays made him appear to be on the spectrum, so it was impossible to rule out.  But this was after 6 months of speech therapy and occupational therapy and behavior therapy and he's made such tremendous progress it was reasonable to suspect there were other reason for his social delays... i.e.  autism was impossible to definitively rule in. 

The doctor's working theory is that the speech delay caused by the language processing disorder created the extreme social delays that made Bear behave an awful lot like a child on the spectrum.  He had no capacity to communicate, so it was reasonable to assume he could not develop socially.

We were told to go forth into the world, keep up with everything the EI folks told us to do and come back in 6 months.  If he starts to catch up socially, he would likely rule out autism at this visit.  (If not, he already told me we will continue with wait and see.)

So... six months in is he or isn't he limbo have passed.  Not a day went by that I didn't obsess over the implications of any given behavior. 

On good days, it was OMG, he shared his snuggle blankie with the therapist's baby doll!

On bad days, it was OMG, he's rolling that truck nonstop and won't respond to his name!

The school district made it clear I should let them know right away if he gets an autism diagnosis. Because of the timing they could get the additional services into the evals before his IEP meeting later in November.  But I feel like my bowl of alphabet soup is full... sensory processing disorder and language processing disorder and non-epileptic seizure disorder and potentially ADHD and signs of oppositional defiance disorder.   Even if it gets him more school services, I'd almost rather not have more if it means another straw.  Because this camel already needs a chiropractor.

I can't even say what I want the answer to be.  I honestly don't know.  The only thing I do know is that my Bear is my Bear and I love him as is, no matter what the paperwork says.