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.


  1. It's tough to get a diagnosis out of any doctor, good luck. Love to the Bear and the monkey!

  2. When I was going through my Little Man's diagnosis - it was tough.

    Even with a team assessment from KidsAbility, my family DR then (and to this day) says that Son "does not present as classically autistic" because he fails to understand that with a spectrum disorder that also includes kids at the high-functioning end of the spectrum (that's where my guy is).

    It sucks dealing with DRs who are dismissive or try to make it your fault but be proud of yourself for sticking with it and for finally finding a medical professional who will LISTEN to you with an open mind.

    No matter what the diagnosis may be, it sounds like your Son is in great hands just having you for a parent!

  3. My son was 5 before anyone diagnosed him with anything. He has been different from birth. I know everyone thinks Im crazy but he was just different. At one point when he was about 2 I had a doctor actually tell me to stop trying to get people to say my child was "retarded". I was so mad. I just wanted someone to validate my feelings and concerns. Some doctors forget that people have feelings. I think even when we go looking for a diagnosis it is always heartbreaking to hear it. Jory (my son) will be 8 in just a little over a week and some days he has fantastic days and some days I have to go pick him up from school and keep him home. Jory is autistic and has sensory integration disorder. Recently the school has re-evaluated him because he is having some problems in class settings (I fought to keep him main streamed and now he is having issues and I feel like a jerk but I want him in class with all the other 2nd graders). Hang in there. I know its hard and I know some days you just want to cry but remember hes is yours. I have never wanted a why because like you my son is my son. It doesn't matter what anyone else says is wrong with him I find him to be perfect. Im glad that I found your blog :). Its refreshing to find someone who feels like I do!

  4. Oh, I can so relate to all of this. Especially feeling like your alphabet bowl is full. I love the imagery of that and the camel needing a chiropractor! I felt that way when my daughter was diagnosed with SPD. As if having one son with SPD and autism wasn't enough!

    Thanks for sharing your insights with such honest sincerity!

  5. Great post! I can relate. We are in that "autism--maybe, maybe not" boat with our 3-year-old son. Like Bear, he has had severe speech delays, leading to significant social delays. Factor in sensory under-responsiveness, and it can sometimes look like autism. But in September the psychologist noted "a couple of flags" because of stimming behaviors, but he does not fit the autism criteria at this time. We should have him tested again in a year, she said. My son has come a very long way and is gaining expressive and receptive language every day (GFCF played a big part in that progress), but processing language still takes him much more time than his peers. However, his peer-to-peer interaction has increased significantly from last year, and he even has a friend at preschool. As you say, my son is my son, I love him as he is. That doesn't need a label.