This is a great title for a blog post, isn’t it? Great title.
Great. Good stuff, right here. I just wish I knew what else to write after such a great title.
This label thing can be so confusing. Don’t get me wrong—I love that my 11-year old son, Jack, is labeled. This is a good thing. It gets him services and helps me decode his mysterious behavior a little and, although the sting of having an identified child never quite disappears, the label helps me focus. It helps me move forward.
People ask me a lot if he has Asperger’s Syndrome or Autism, if he’s Pervasive-Development Disorder, or maybe just plain old quirky. I always shake my head and purse my lips so I look really important. Then I say, “Well, we just call it autism!” as if that’s a logical answer.
And to be honest, I’m not sure of the difference. So this week, I decided to do a little research, and I turned to none other than the highly esteemed Wikipedia.
(Research was never really my strength.)
Asperger syndrome is “an autism spectrum disorder (ASD) that is characterized by significant difficulties in social interaction and nonverbal communication, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical (peculiar or odd) use of language are frequently reported.
According to Wikipedia, Autism is “a neurodevelopmental disorder characterized by impaired social interaction, verbal and non-verbal communication, and restricted and repetitive behavior. Parents usually notice signs in the first two years of their child’s life. These signs often develop gradually, though some children with autism reach their developmental milestones at a normal pace and then regress. The diagnostic criteria require that symptoms become apparent in early childhood, typically before age three.”
And Pervasive Developmental Disorder not otherwise specified (PDD-NOS) is “one of the three autism spectrum disorders and also one of the five disorders classified as a pervasive developmental disorder (PDD). According to the DSM-IV, PDD-NOS is a diagnosis that is used for “severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific PDD” or for several other disorders. PDD-NOS is often called atypical autism,[because the criteria for autistic disorder are not met, for instance because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these. Even though PDD-NOS is considered milder than typical autism, this is not always true. While some characteristics may be milder, others may be more severe.”
Yawn. I mean, really, who comes up with this stuff? Doctors? The military? NASA?
I guess you could say Jack is like an old-world recipe for spectrum disorder. He’s a little of this and a little of that, a pinch of rigidity and a dash of perseveration. He has Asperger’s repetitive nature, but he lacks the necessary language skills for that particular diagnosis. He is physically clumsy. He has low muscle tone and as he approaches adolescence, he’s becoming a little, well, squeezable.
He may or many not have atypical symptomatology. I don’t know what that is.
Wikipedia didn’t have quirky listed, so I turned to Merriam-Webster, who defines quirky as “an unusual habit or way of behaving.”
In the beginning, Jack was quirky. As a 1-year old, he had weird little behaviors; he couldn’t seem to chew even the softest food, like a banana, and he would sleep through the night for a week straight and then not sleep for days at a time.
At some point, probably around eighteen months, “quirky” gave way to “Houston, we have a problem,” and we knew it was time for the label. We knew because his idiosyncrasies—his quirkiness—was interfering his life and his development. He was not making any progress.
So at just under two years old, while we lived in Buffalo, Jack was diagnosed with Pervasive Developmental Order-Not Otherwise Specified. This is also called PDD-NOS.
When he was three, we moved to New Hampshire. On his very first day of preschool they told us his new label was Autism Spectrum Disorder, or ASD for short, because New Hampshire didn’t carry the classification for PDD-NOS.
I promise you, he did not change in our trip across the northeast part of the country. He was the exact same child we buckled into a cracker-littered car seat and drove across New York State, through Connecticut, into Massachusetts, and eventually, after eight hours of driving, over the border into New Hampshire.
He was the very same boy who screamed for 461 of the 465 miles, who only slept or quieted when Kermit the Frog crooned The Rainbow Connection, and who gobbled McDonald’s French fries at warp speed with his greasy little fingers.
Yet the second we moved to New Hampshire, he was no longer a child with PDD-NOS. Instead, he had Autism Spectrum Disorder.
Per Merriam-Webster, a label is a word or phrase that describes or identifies something or someone.
Every day, I make a little bit more peace with his autism label. I remind myself that everything has a label; cars, houses, animals, people, flowers, buildings. The muffin I am eating right this second has a label, and that label is delicious.
(Also, blueberry and not Paleo, but I may be getting off track here.)
To this day, Jack is still quirky. He thinks cars cost $3 but he can fix the DVD player. He spent an hour screaming because I made him unload the dishwasher, but when no one was looking he changed two light bulbs that had burned out in my office lamp.
He starts every single day with an episode of “I love Lucy.”
He ends every single day with a bowl of ice cream.
He knows the population of Nigeria, but the other day in the car he asked me what the word refuse meant.
I guess you could say the threads of perseveration and routine and rigidity and anxiety are intact within the spectrum tapestry, and yet the colors change by the minute, by the hour, by the day.
If someone from NASA or a researcher from a medical team knocked on my door tomorrow and asked me if Jack has Asperger’s or PDD-NOS or Autism or if he was quirky, I wouldn’t give them a straight answer. Instead, I would tell them this story:
It was close to 8:00 at our house and there were dirty dishes all over the counter and the table. The pots and pans I’d used to cook dinner were still on the stove. I felt unmoored, undone. I wanted the night to be over.
It had been a long afternoon of reminding Jack to finish his homework and taking away the computer and listening to him scream for the computer. Now, he was clutching his notebook in both hands and threatening to light it on fire.
I stood behind the sink, and my husband Joe sat at the counter.
“Why can’t you—“
“He’s exhausted, let it—“
“I can’t let it go, Carrie ! He needs to finish this problem!”
All at once, a young girl stepped between us. She was wearing her pink bathrobe, and her hair was wet from her shower.
“Mom, Dad, I think I can help him. He likes to talk to me. Let him talk to me.”
“Rose, we can handle this.”
“Let me try. He will talk to me.”
By this point, Jack was circling, screaming, flapping. Gently, she followed him through the kitchen.
“Jackie,” she called out softly, using her special nickname. “Tell me. Tell me about 6th grade.”
“You KNOW,” he raged, hitting his hands on his head. “I TOLDED YOU!”
“Tell me again,” she said so quietly. “Tell me about art class.”
“No more no more paintbrushes no more for a week because there is no more.”
“Why, Jackie? Why no more paintbrushes?”
Watching as she took his hand and guided her big tall brother to the nearest stool, I nearly wept, from what exactly I can’t say. Gratitude, or maybe relief. Or maybe because I was—and am—so tired of it all; the battles for the simplest task and the screaming and the stimming and the longing and the trying.
This will never be over. No matter how many times we change the name, autism is not a Halloween costume he can slip on and off. It’s more like a tattoo. It is inky and permanent and real.
Jack never did finish his homework, but he sat side by side with his sister, and that was enough. That was the very best we could do this time.
After I finish telling my story, I will go on to say that I do not care what we call it. I do not care if one day he’s considered Asperger’s or PDD-NOS or whatever term the people in charge conjure up next.
I just want to remember that night, in my kitchen.
I want to remember the pinkness of her robe, and how her hair curled up on her cheek. I want to remember the way he leaned toward her to hear her voice, the way he was calm for the first time in hours.
I want to remember that his label is fluid. It breathes and moves and changes. It is infinitesimally different today than it was the day before.
I want to remember that before he is a label, he is a student and a classmate and a neighbor and a cousin.
He is a nephew and a brother.
He is my son.
He is Jack. Or, for one 8-year old girl, Jackie.