Same journey. Just a new path.

Olivia has low-functioning autism.

Low-functioning autism.

After the hour-long laugh fest that O had a while back, I found myself convinced more than ever that our girl was autistic.  So, I made an appointment with Solutions of Hickory.

Brian and I took Olivia for an initial consultation and met with a neuropsychologist.  He was very kind and obviously intelligent in the areas of autism and developmental delays.  He let Brian and I interrupt him and ramble on about the traits of our girl.  I wasn’t even sure if the evaluations he could administer would be worth doing since we had already had so many developmental evaluations over the years, not to mention the fact that we have seen a neurologist who specializes in autism.  He assured us that this could be a helpful evaluation, especially since she had not been evaluated since leaving CDSA when she turned 3.

The following week, Brian and I had our two-hour parent interview, which is part of the evaluation and involves lots of questions about Olivia’s abilities and characteristics.  The next day, we went in for a three-hour evaluation where Olivia was asked to perform certain tasks.  Our stink pot decided not to show too many tricks that day and acted as if she hadn’t slept all night (which was not the case at all- the Clonidine had worked its magic the night before).  She did surprise us a few times with matching blocks, but for the most part, she was in her own world.  Dr. reminded us that the parent interview is part of the full evaluation for that reason and to remember that our observations and insights were part of the data collection process.

The results meeting was scheduled for 8/12, but Brian asked before we left that day if the Dr. could give us any indication based on his observations.  He said that we had mentioned other doctors/therapists saying that Olivia has autistic “traits” (but not autism).  He then said that he believed that it wasn’t so much autistic “traits” that he was seeing, but instead were autistic “indicators”.

“Red flags.”

No shock there.  After all, we sought out a private evaluation because we believed she is autistic.

Flapping arms.
Rocking on the steps.
Head banging.
Lack of social interactions and eye contact.
Regression of skills.
Saying her alphabet backwards before the age of three.
Saying mama for the first time two weeks ago, at the age of five.  (Pointing to a picture and naming me Mama, not maMA-maMA like she’s done in the past.  She pointed to Brian and said Dada, too.  Awesome.)
Echolalia.

So, yesterday, we met with Dr. to discuss the results of the evaluation.  I wasn’t overwhelmed or emotional before the appointment.  Part of my calm was certainly related to the fact that I doubled my Zoloft dosage a couple of months ago.  (My depression journey is a long post for another day.)  But, this results meeting was also an opportunity to learn more information about our mystery girl.  Over the years, Brian and I have found a sense of peace about the unknowns.  At least most of the time.  Or at least some of the time…  We believe God chose us to be her parents.  He also intended us to have faith in the unknowns for five years now.  Answers come in His time.  It’s an on-going process to let go of the desire to know everything.  Always will be.

But, yesterday as we sat in the waiting area before our appointment, there seemed an odd familiarity to the emotions I was feeling.  I finally made the connection and was taken back to the memory of an ultrasound appointment at around 20 weeks pregnant with my second child.  We waited to be called back, anxious to find out whether we were having another boy or a baby girl.  We had not found out the gender the first time around and were surprised when Jacob made his way into this world.  What an awesome experience that was!  But this time, we wanted to know.  We craved the news.  Waiting during those last moments before the appointment left me consumed with nothing but thoughts of an answer.

Boy or girl?  

It really didn’t matter.  We loved that baby already.  We just wanted to know.

Autistic or not?

It really didn’t matter.  We loved that baby already.  We just wanted to know.


Dr. Neuropsychologist is so good at what he does.  You can tell he knows his stuff.  And he has wonderful skills of explaining, listening, and evaluating.  All great characteristics to have in an evaluation results meeting with parents of a mystery girl.

To start the almost two-hour conversation, he calmly talked about the details of the assessment, breaking into two parts:  Autism and Intellectual Disability (otherwise known as mental retardation).

First, we covered the autism evaluation.  After he reiterated the presence of autistic traits in our girl that were apparent during the assessment (and parent interview), he said it.  The words.  What we’ve thought for so long now.

Olivia is autistic.

For the past week, I imagined how I would respond to those words.  Or the opposite of those words.  No matter the scenario, I envisioned myself crying.  Not like tears of devastation or fear or pain, but more like tears of relief to finally have an answer.  Any answer.  I was desperate to narrow this path we’re on, even if just by a sliver.

The words came.  The tears didn’t.

Again, I think the Zoloft played a part there.  But, the truth is, we’ve known it for so long now.  I went through the fear and devastation a long time ago, in small bits and pieces, mixed in with the grief process of her physical disabilities.  In an evaluation, in an appointment with the neurologist, the geneticist, talking with therapists, I would bring up my concerns with her autistic traits and cringe as I waited to hear their opinions.  I would breathe a sigh of relief when every answer was, “Yes, she has some traits, but I don’t see autism.”

I can imagine that most parents get the diagnosis of autism and retreat into a deep canyon of grief.  Of fear.  Of pain.  I get that.  Oh, how I get that…

But, this was different.  It was an answer.  Like when we waited for the ultrasound technician to say it aloud and change our world forever.

This one looks like a chick.
 
She is autistic.

Tears will come, I’m sure.  But not yesterday.  Because for us, yesterday was about answers.  And a new path.  And about helping our girl.

Next, Dr. Neuropsych discussed the results of the intellectual disability evaluation.  We covered the basics of the IQ bell curve and what Olivia was able to do and not do during the assessment.  Then he said more words.

Olivia is intellectually disabled.

Again, no shock.  No tears.  We knew this already.  It was actually nice to be sitting in a room with an expert who, after many hours with us and O, and after reading my big, fat notebook of documentation, and after using his immense knowledge of developmental disabilities, was able to definitively say those words.

Intellectual disability.

There it was.  Autism and intellectual disability.

I managed to ask him three separate times what the difference was.  Is she autistic and intellectually disabled?  Or does one label represent both?  And is one because of the other?  As much as I have researched about both labels, I’ve struggled to wrap my brain around how these two relate.

Dr. was patient and helpful as he tried to explain the connection and separation of the two.  On the third try, I finally felt like I was beginning to get it.  Maybe.  For today, anyway.

The autism spectrum is so large.  There are high-functioning autistic people who are very intelligent, able to have conversations, and more.  Then, on the other extreme, there are low-functioning autistic people who are usually non-verbal or very limited in receptive and expressive language and other adaptive skills.  That’s where Olivia falls on the spectrum.  Low-functioning.  An IQ of 40.

My confusion in this area is exhausting.  I can think myself in circles about these two diagnoses and wind up right back where I started.  But, I think that the basic explanation here is that Olivia is autistic.  And on the spectrum, she is on the end that is considered low-functioning.  Therefore, the label of “intellectually disabled.”  If she wasn’t autistic, she would have more eye contact and less of some autistic traits like regression and social interaction.  And I’m guessing, probably wouldn’t have said her alphabet backwards before the age of three.

So, Dr. said that the best way to describe this new diagnosis is “low-functioning autism.”

We talked about next year (kindergarten options), IEP changes, plans for sessions where Dr. will help us with interventions and therapies specific to autism.  We also talked about biomedical approaches to treating autism.  (This conversation will have to wait for another post.  I don’t have the energy to type it all right now!)

My head was swimming when we left.  I guess I was just getting my bearings.  Brian was my rock, and I have no doubt yesterday’s peace was because he was by my side, going through this part of the process together.  I thank God for him every single day.

Low-functioning autism.

Same journey.  Just a new path.