How Did You Know? (Part 2)

The evaluation procedure at the University of Washington's Autism Center was a two-day, multi-discipline event. Each day was long – maybe four hours. I don’t remember exactly, but I remember it seemed daunting. Our first appointment on the first day was with the developmental pediatrician. He observed me and Ben interacting for about ten minutes from a two-way mirror and then performed a 30-minute evaluation. I thought Ben did pretty well, but when we were walking down the hall to our next appointment with the occupational therapist (or the physical therapist, speech/language pathologist or psychologist – who can remember?), the development pediatrician pulled me aside.

He stopped walking, put his hand on my arm, looked me in the eye and said, “Look, you have full days ahead of you today and tomorrow and it’s another week before you get our official results, but you should go home today and start researching Birth-to-Three Centers for Ben. Many have waiting lists and you shouldn’t waste a week waiting for our results. You need to get on the lists immediately. I’ve already seen enough that concerns me to know that Ben’s going to need the services provided there.”

So there it was. After about a year and a half of jumping up and down, telling anyone who would listen that something just didn’t seem right about Ben’s behavior to no avail, all it took was 30 minutes of a roughly eight-hour evaluation process for someone to tell me they saw the same thing.

We finished the evaluation process and Ben’s dad and I went back a week later for our team meeting to hear the results of the evaluation. I went to the meeting expecting a PDD-NOS diagnosis. Autism, a spectrum of disorders ranging from severe impairment to high-functioning and Asperger’s Syndrome, is diagnostically on another spectrum called Pervasive Developmental Disorder. When someone displays a certain number of symptoms from the broad category of Pervasive Developmental Disorder, but doesn’t qualify for a specific diagnosis of autism based on those symptoms, they receive a diagnosis of Pervasive Developmental Disorder -Not Otherwise Specified (PDD-NOS). I sometimes refer to this diagnosis as “Autism Lite”. I went in expecting the “Autism Lite” diagnosis and was surprised when the developmental pediatrician opened the meeting by telling us the team had diagnosed Ben with full-blown autism. The psychologist on the team went on to explain that while Ben definitely met the criteria for the diagnosis, they felt his impairment was on the mild side and that he would do well with proper interventions.

It’s surreal to sit at the head of a table surrounded by no fewer than six doctors, therapists and other medical professionals and hear the news that your child has autism. You might think it would be devastating to receive this news and I know that it is for many parents, but I had quite a different reaction. I actually felt relieved. Relieved to know I wasn’t crazy and I wasn’t (necessarily) a terrible mother. Relieved to have direction and to know that there was help out there for us. I did not leave that meeting devastated. I left that meeting feeling empowered and ready to get to work.

That was just six years ago, but when I consider Ben’s progress it seems like a lifetime. My gratitude for those who have helped us along the way is boundless – cherished friends, family, doctors, teachers, therapists, school administrators and day-care providers – we’ve had more support than I ever could have hoped for. But nothing can compare to the admiration I feel for Ben. As hard as everyone has worked to help him, he has worked that hard times ten (at least). His determination is nothing short of remarkable.

Whatever I have given Ben, though, he has given me so much more. He humbles me, teaches me, inspires me, motivates me and gives me hope every day.

Ben Heagler, my sweet, sweet boy - you are a light.  And I consider it my greatest honor to help you shine.