“It’s a pervasive developmental disorder.” That’s what the pediatrician said about my son when he was two.
It had an innocuous acronym, PDD. It was the second label after “intractable epilepsy”. Five more followed over the years. The diagnosis line in his medical chart used a tiny font to fit all the words.
I thought we were living with autism, but now I learned that autism was just a subtype of PDD, and even that had subheadings.
He was diagnosed on a fall afternoon. The leaves were gold and red, and tiny snowflakes fell as we walked through the parking lot to the clinic. We knew things were wrong with Porter long before that day, but the developmental quizzes we took at each doctor’s visit were just broad enough for us to find some hope.
We were led down the hall to meet the doctor. The patient room was bright and colorful. A poster on the wall said, “Make it Happen,” and showed a group of men rowing in a storm. We were in that boat, and I wanted to make it happen.
I looked at my son at the kiddie table. The chairs were tiny and red, but he knelt beside them stacking Legos into a tower. One dropped on the floor and he scrambled under the desk, grabbed it and perched it on top of the others. He had his back to us.
“Hi Porter, what are you building?” The doctor asked in a lively voice.
“Can I help you make the tower?”
“No!” That was it. Porter’s boat was sunk. He found a pen under the table and crawled towards the outlet.
Even though the room was rigged for safety, Porter looked determined to test the limits. I scooped him up and looked at the doctor.
“So what’s his diagnosis?” I asked. I half wanted one and half didn’t.
Labels limit kids. Funding comes from labels. Those were the thoughts running through my head.
“Well, pervasive developmental disorder is a broad category. It could be one of five types. Some are common and some aren’t—it may be Autism or Asperger’s. Some of those kids are very bright. We have one four-year-old doing advanced math.”
I watched Porter stuff a block in his diaper and tried to picture him doing calculus equations in his head. The image didn’t come.
“It also could be something worse: Childhood Disintegrative Disorder,” the doctor said. That was an upper. The labeling industry needed better branding.
If Porter had been born a hundred years ago he would have a different label. “Simpleton,” was the popular one around 1850, but it was soon replaced by “moron,” since it was a better term. After this came “feeble-minded,” from the Latin word flebilis, meaning “to be lamented.” The term was mainstream and hailed as progressive: In Minnesota, our state hospital was first called the Minnesota Institute for Defectives and later upgraded to the School for the Feeble-Minded. At some point, feeble-minded was out and the parade of others succeeded it: idiot and imbecile.
The problem with the labels went beyond their offensiveness. They were touted like blood type: Mental retardation means this future, and Asperger’s means that one.
As a psychologist, I was inherently wary of them. The categories themselves had come and gone and had an accordion-like quality to who ended in each. After all, it was as recent at 1973 that the American Psychological Association classed homosexuality as a mental disorder. It wasn’t entirely removed, but instead replaced by “ego-dystonic homosexuality,” or anxiety around sexuality. It didn’t seem to me that gay people had the corner on that one. This remained a label until 1986 when it finally disappeared, and the millions of diagnosed people suddenly were deemed typical.
I walked out of the doctor’s office with our diagnosis that day. Pervasive developmental disorder meant we were headed downhill. But it also meant Porter received for special education. It seemed better to take the label and chance it.
Besides, I probably qualified for Patty-Hearst Stockholm Syndrome with the medical professionals.
Over the years, the labels kept coming: Mental retardation, epilepsy, autism, hyper activity, speech delay, brain injury. But that afternoon, it was just PDD. His sister Tyler was in kindergarten and took the day in stride.
“Well, I guess we know what he has now,” I said, as we walked back to the car.
“That doesn’t mean anything, Mom.” She held her brother’s hand and swung it back and forth.
“He’s still just Porter.”