By Beth Ann
At a very early age, we began describing our son as “strong willed.” He was always very comfortable asserting himself. People pleasing was a concept that evaded him even then. However, as I thought about the kind of peer pressure he might face as a teenager, I viewed his ability to say, “No,” as a good thing at least 50% of the time.
When he received his ADHD diagnosis at age 7, our journey of learning and treatment ensued. As Will grew, there was talk from his therapists and his medication doctor about Oppositional Defiance Disorder (ODD) because he displayed many of the characteristics of this condition. But, when he became a teenager, we watched his hyperactivity all but disappear. It was replaced by frequent anxiety, fatigue, and reclusiveness. While Will still resisted doing what was asked of him, the way he resisted was different. Instead of clear and assertive declines, we noticed he became overwhelmed when he was asked to do what most would consider typical tasks. His progress in therapy had plateaued. Our family therapist at the time suggested we get a comprehensive psychological evaluation which we did. It was now almost a decade later than Will’s original ADHD diagnosis. Following many tests and interviews with teachers and family alike, Will was finally diagnosed with autism spectrum disorder. We had our first lightbulb moment. Of course, it’s autism! His symptoms and behaviors made so much more sense considering this new diagnosis. Will’s need to hibernate after school or longer social engagements was clearly a response to overstimulation. His tendency to become overwhelmed, his picky eating habits, his sensory issues and his difficulty reading social cues and expressions all made sense. But what of his ongoing difficulty with typical responsibilities and tasks?
As I educated myself about autism, I came across information regarding Pathological Demand Avoidance (PDA). Fairly accepted in the UK but still not an independent diagnosis, PDA is a profile on the autism spectrum characterized by the following*:
Uses social strategies to avoid completing perceived demands (delaying, distracting, shouting).
Experiences excessive mood swings and impulsivity.
Social but possesses only a superficial understanding of social interactions and relationships.
Comfortable in roleplaying/pretending.
Demonstrates obsessive behavior that is often focused on specific people.
Will displays every single characteristic of the PDA profile! The difference between ODD and PDA is evident by the root of the condition. Where ODD is rooted in willful defiance, PDA is rooted in deep anxiety and the sense of lost control or autonomy. This made so much sense when we also considered Will’s gender and body dysphoria accompanied by his eating disorder. Will is stuck in a body that does not match who he is on the inside. Anorexia was a means for Will to regain some level of control over his body by controlling his weight. He routinely expresses extreme anxiety about growing up. Adult decision-making and responsibilities terrify him. Whether PDA is widely accepted or not, we can proceed with the assumption that Will fits this profile. It only means that he requires different and/or additional support. So, what does that support look like?
I do my best to know and understand my son, Will. Knowing what types of demands often trigger him enables me to plan mitigation strategies in advance. I also pay attention to his mood. If I see him struggling and I’m able to be flexible, I may choose a later time to make a I give Will advance notice whenever possible.
I often let Will choose the exact time to complete a task. For example, I’ll say to Will, “If the dishwasher gets emptied anytime between noon and 6:00 PM, that that will work great!”
Rephrasing so that demands sound less like demands sometimes helps. Instead of saying, “Put your clothes away now so we can go,” I say, “If the clothes make it into the dresser this afternoon, we’ll be able to go to the mall tonight.”
When possible, I stay with Will as he carries out a task. In the past, he would get completely overwhelmed and panicky when asked to clean his room. He felt better if I sat with him while he did it (I did not do it for him). I was able to play “director” by breaking down the job into smaller pieces to lower his anxiety. Example: just pick up the clothes and put them in a pile. I also enjoyed spending time and having good conversations with him.
When possible, I allow some flexibility or negotiating to help Will feel more in control. For example, I might talk about all the household chores that need to be done and allow him to choose which ones he will complete.
While not unique to supporting only PDA, it is still a strategy worth listing. I offer lots of positive reinforcement in the way of praise and/or rewards after Will completes a demand.
Ultimately, demand avoidance is rooted in anxiety, not defiance. Jobs that seem small to us can seem monumental to someone on the PDA profile. The loss of autonomy that may accompany fulfilling demands others make can leave the individual with autism feeling anxious and lost. Learning how to help manage their anxiety doesn’t just ensure things get done. I’m also teaching Will techniques that can help him manage his own anxiety as he gets older. And guess what? Now he cleans his room and his bathroom on his own! He also mows the grass and cleans his cat’s litter pans independently and typically without reminders. He just needed a little extra time and support to mature.