Doernbecher Children's Hospital

Gracie at Healing Reins

Grace continued to make the kind of progress that is both encouraging and frustrating at the same time.  She would take two steps forward, giving us cause for great joy and celebration, and then just as quickly as she had gained a skill or a level of confidence she would take a large step backwards, practically breaking our hearts in the process.  

However, the progress she was making did remain positive.  It was a slow and steady growth.  Two steps up and one step back.  It was the steps back that hurt and were unpredictable.  

By the time Grace was almost 4 1/2 we still did not have a diagnosis for her.  I had exhausted all the resources available to me in Central Oregon.  If she did have autism, it was a mild enough form that the Early Intervention personnel were not able to pick up on it and I had no idea where else to go to receive a diagnosis.  I needed desperately to either have her diagnosed with autism or to rule out autism once and for all.  If it was not autism, then I needed to begin to pursue other possible disabilities.  As a final, desperate, attempt for closure I scheduled an appointment for her at the Doernbecher Children’s Hospital Child Development and Rehabilitation Center (CDRC) Autism Clinic at Oregon Health and Science University in Portland.   

The CDRC Autism Clinic in Portland is a large clinic at the Doernbecher Children’s Hospital that has many excellent doctors and therapists on staff who specialize in diagnosing and/or treating children with autism.  An appointment with them usually takes about 4 - 6 months to schedule (ours took 4 months), and the appointment actually lasts all day long.  

We drove up to Portland with Grace and our baby who was one year old at the time.  We stayed the night with our dear friends who generously offered to watch the baby while we took Grace to her appointment.  If you have never been to Oregon Health and Science University (OHSU), it is a very large place on top of a hill right in the heart of Portland.  My husband and I are not very comfortable driving in the city, but we somehow made it to Doernecher.  As I led Grace into the CDRC I thought to myself that maybe I should have put her back on gluten for today, but it was too late now.  

I brought with us a list of observations and concerns I had typed up, a timeline of events and interventions I had tried, and photographs I had taken during the past week of the items Grace had been lining up.  Grace would repeatedly line up objects.  Sometimes they were toys and sometimes they were strange things like rocks, pieces of soap or pieces of food.  

The first part of our appointment was a thorough hearing screen.  Grace has had many of these due to her recurring ear problems so I wasn’t expecting anything exciting out of this.  Her hearing was within normal limits.

Following the hearing test Grace was administered an IQ test.  She received the Stanford Binet and scored in the high average range.  Again, I was not surprised.  

She met with an occupational therapist.  She administered the Autism Diagnostic Schedule.  Her scored indicated that Grace was non-spectrum (not autistic).  She then administered a Sensory Profile which showed a cause for concern in the area of sensory processing.   She also interviewed us about Graces behavior and from that interview it came back that Grace’s behavior was clinically significant in the area of internalizing problems.  

Grace then met with a speech pathologist who administered the Autism Diagnostic Observation Schedule.  Again, she was found to be non-spectrum in all areas.  

We spent a significant amount of time with a neurodevelopmental pediatrician.  She interviewed us and examined Grace for about 1 1/2 hours.  I was hopeful that she would  have a miraculous answer for us at the end of our time at Doernbecher.  She asked us a multitude of questions and took copious notes.  

At the end of our long day a large team met to go over the data they had gathered about Grace.  When they had finished discussing her they called us into the room and shared with us the conclusions they had reached.  Grace did not have an autism spectrum disorder.  She did not have autism.  Not at all.  

You might think I was relieved to hear this.  I was not.  I had wanted so much to find some answers at CDRC and instead was left only with more questions.  At least we now knew that it was not autism.  

It wasn't more than a few days later that Grace stood again at the edge of the carpet shaking.  It took me 20 minutes to convince her to walk across the hardwood floor to the breakfast table and another 15 minutes to get her to sit in her chair.  Why didn't she demonstrate any of this behavior when she was at Doernbecher?  She went the entire day at the CDRC without a single incident.  I guess today was the day to take another step backward.

At the bottom of the summary paperwork from the CDRC was a small paragraph that recommended closely monitoring and tracking her compulsive behavior...