By Kami-Leigh Agard
“Let it be virtuous to be obstinate.”
– William Shakespeare, “Coriolanus”
To say my daughter is as stubborn as the will of kings would be an understatement. From getting dressed, undressed, in the car, out the car—you name it, when she is in a particular mood, even Job would lose his crown of patience. At first, I thought perhaps it was just her adolescent hormones as she was transitioning from her tween to teen years. However, after countless complaints from the bus and reports from the school that it took over an hour to get Soa off the bus to go into school and other incidents of resistance in the classroom, I began to wonder—Is this noncompliant behavior a characteristic of her ‘brand’ of autism? After researching, I discovered the term, Pathological Demand Avoidance (PDA), alternatively referred to Rational Demand Avoidance or Pervasive Drive for Autonomy. PDA was first introduced in the 1980s by British developmental psychologist, Professor Elizabeth Newson, known for her work with ASD children. The avoidance is called “pathological” because it interferes with functioning at home or at school. Avoidance can take many forms, including making excuses, creating a distraction, intense focus on something else, withdrawing, escaping, or having a meltdown or panic attack. For my daughter, who is nonverbal, she freezes and is unrelentingly immovable. Here’s an example.
Each day when my daughter’s bus arrives from school, I could be seen running across the street to the bus with a snack in hand. Though sporting a big smile, inside I’m literally quaking, silently praying, “Please God, make Soa get off the bus.” On the days she gets off the bus without a hitch, I’m jumping for joy. Other days, after much coaxing and me unashamedly bribing her with a snack, it may take about 15 minutes. However, on this particular day, as soon as I entered the bus, I immediately knew this was going to be THE DAY. And to add insult to injury, Soa thrust us all in the limelight with neighbors, passersby and even an ambulance as the empathetic audience. Sweating profusely, she was lying on the floor of the bus, refusing to get up. After much coaxing and dangling a snack, to no avail, would this girl get up. With the bus driver shouting, “This is not right. I want to go home,” the bus monitor and I dragged Soa through the bus’ back door. Then with the help of my mom and neighbors, we dragged her to the sidewalk. Soa is prostrate on the ground, refusing to move and I’m trying to put a brave face as the neighbors, who all know she’s autistic, are plying me with questions. Then folks driving by, stopped to ask if everything is okay. One driver even said he is an EMT and inquired if my daughter was having a seizure. An ambulance stopped to see if we needed emergency assistance. All this time, Soa is happily devouring the chocolate I gave her, still refusing to get off the street, but grinning as if she was enjoying a program. Then after an hour when the conversation turned to the neighbors talking about their own issues, Soa jumped up, gave everyone her million-dollar smile and jauntily skipped up the steps. We all stopped talking, looked at Soa and immediately burst out laughing. However, if this was an emergency as in God-forbid, a fire, this would be no laughing matter.
People with PDA tend to have an adverse reaction to being told how to behave or what to do, even when it’s something that’s an ordinary part of their daily life—and even when it would benefit them. As one U.K. parent stated in her blog, “Steph’s Two Girls,” regarding her PDA autistic daughter: “One of the first words used about our daughter when we first spoke with healthcare professionals was ‘oppositional.’ It was clear that she wanted to avoid demands. However, over the following months, we began to understand that it was not a desire to avoid demands, but a need to avoid them, to stay in control and avoid even higher levels of anxiety.”
Stay tuned as I dig deeper into why PDA is prevalent among autistic individuals and the unorthodox strategies that help.
Rockaway Beach Autism Families’ next parent support group meeting is Thursday, June 15, 7 p.m. at Knights of Columbus (333 Beach 90th Street). For more info, visit: Rockaway Beach Autism Families on Facebook/Instagram.