The Rocky Road to a Diagnosis

C, my three year old, was a perfectly normal, happy baby. He hit every milestone on time, some early, and besides having trouble sleeping, didn't show any warning signs of anything, much less autism. The sleep thing could have been partially my fault since I'm not one for schedules, but it was probably the one early warning sign that we had.

So, after at least 18 months of perfectly normal development, he stopped pointing. It didn't jump out at me at the time, but a few months after his second birthday, I knew he wasn't talking as much as he should. However, he was so normal in every other regard that even the pediatrician just said that sometimes boys talk later and not to worry (I learned later just how useless she was). Nearing C's third birthday, it became clear that what we thought was just a stubborn phase was actually an almost complete loss of receptive language. He never lost expressive, but its development slowed to a crawl. He spent most of his time running in circles, flapping his hands, and babbling. C no longer wanted to be read or sung to, which were two of his favorite things just a couple of months prior. He couldn't even tolerate his Kindermusik classes, which he'd also loved. Something profound had happened, and I found the name for it late one night watching videos of autistic children on YouTube. I never knew what it felt like to have your blood run cold until that night.

So began the search for a diagnosis. It would take another five months before anyone said the term PDD-NOS to us, but in the meantime we learned (on his third birthday, no less) that his receptive language tested at the level of a 14 month old, and his expressive was that of a 19 month old. He also had a mild fine motor delay and sensory integration disorder.

Why five months for a diagnosis? Well, C was too old for Early Intervention, the schools were out for the summer (this was late June), and every reputable psychologist in the area had a waiting list that was months long. So, we pretty much gave up sleep in favor of research. The label that was finally given to C is a relatively meaningless one and is a huge source of frustration. It just means Pervasive Developmental Disorder - Not Otherwise Specified. In other words, he's on the autism spectrum, but none of the current labels really fit, so we're just going to stick him with this one and see how it goes.