Editor’s note: After publication, information about how the label, Pathological Demand Avoidance, is being used in ways that harm autistic people and especially children, was brought to our attention. We are working to revise this article to reflect that information. The information can be summarized as follows: While demand avoidance is a consequence of neurodivergence for many people, it is a rational response to neurological disability and not a pathological behavioral issue.
I know the look. The look that says, “Oh gawd, you’re one of those permissive parents…” It’s the look insinuating you’re raising the next Veruca Salt. That look demanding you get that child under control. The one aghast anyone would let their child get away with that. It’s a look that slaps you with judgement cold and harsh; you’ve come up short.
I can picture that look on my brother’s face. No allowances for the severely jet-lagged 3-year old or her parents who just flew half-way around the world to celebrate his wedding. No patience, understanding, or support. Just pure, unadulterated horror at my child’s behaviour and our resigned attempts to redirect her spiraling rage.
Back then, we had no idea what we were dealing with. We knew we had a spirited child who never stopped moving, rarely slept, was uninterested in toys, and raged to frighten the devil. It was many years before the word “autism” echoed through our home and newsfeeds.
Floundering new parent attempts to solve one problem only opened a door to a host of new ones. Our laments were met with alternating responses of “Oh, you’re just overreacting, all kids do that!” and blame, blame, blame, blame. Clearly, we were doing everything wrong.
When she was having a good day, it was a very good day, but when it was a bad day, her moods were wicked. Never intentionally wicked, that much was clear to us; but the intensity with which she resisted doing anything, even that which she wanted to do, was endlessly baffling.
Child care professionals, child health nurses, doctors, people with many children– no one could make sense of why this perfectly joyful and exuberant child would suddenly fly into a blind rage and flatly refuse to cooperate under any circumstances.
I worked out a formula for what was necessary to limit the likelihood of an explosion: adequate sleep, plus advance planning, sufficient food, and something that would allow her to shut out the world could get us over the line. If I ran myself ragged aligning the stars, we might make it through a public experience before the screaming started. It was never a matter of if, only when.
One by one, the children around us, the ones with whom she connected, started receiving their autism diagnoses. I read more about it, wondering if that might explain our situation, but she didn’t fit the profile.
She was talking at 2, was engaging and interactive with many people. I couldn’t find a pattern. Then I stumbled across a website detailing the hallmarks of Pathological Demand Avoidance and was hit by a flood of recognition.
The pattern was suddenly so clear. All the disparate fragments aligned into a pattern I could never quite articulate. My charming daughter was finally revealed to me in her entirety, and I wept.
The thing that was so confounding about her behaviour was the wide range of social strategies used to avoid a demand. It is worth clarifying here that “demand” is a very broad descriptor, including internal (e.g. elimination, hunger, tiredness), personal (e.g. wanting to complete two different activities), and external (e.g. a direct or indirect request).
This is baffling to observe and challenging to describe. It’s hard to imagine actively working against doing something you actually want to do. The wild array of avoidance strategies just compounds any efforts to find a pattern. An avoidance scene might start with distraction, morph into resistance, then finally erupt into rage.
The same demand on another day might bring an entirely different avoidance evolution, although if mishandled, almost always ending apoplectically.
For years, I let others disparage me and became convinced her behaviour was all my fault. I absorbed the notion that I was inadequate, despite my relentless efforts to be fair, firm, and responsive. I don’t know if I ever would have been freed from the prison of self-deprecation were it not for my second child. She’s now 3 and proves to me every day that I’m a decent mother.
When she has a tantrum, we can respond the way the parenting books advise and she gets over it. She calms herself down and apologises for anything nasty she did when she was out of control. We have a cuddle and all is right with the world. She’s stubborn and headstrong, but she can be convinced to be helpful and cooperative without the world screeching to a halt.
As a tired parent juggling the demands of multiple jobs, household, and two very different children, it is admittedly difficult, if not downright impossible, to think on my feet and constantly modify my response to the shifting sands of my daughter’s demand avoidance.
Sometimes I need compliance so we can get out the door, sometimes I need silence to manage my own sensory issues and avoid melting down myself, sometimes I need control because everything feels like it’s spiraling away. But I’m trying to learn to balance our apparently-conflicting needs by shifting the focus to our shared needs.
My oldest daughter is not a selfish, self-absorbed brat. She is not naughty. She is thoughtful, deeply insightful, curious, and articulate. She carries the weight of the world on her shoulders. She is riddled with anxiety. She needs to feel control in the external world because everything feels so out of control inside.
She is an amazing person.
So, don’t give me that look. Don’t judge me before you’ve walked a mile in my shoes. No one is a perfect parent, but I’m the most perfect parent for her. I’m listening, feeling, and holding her hand through this minefield she’s navigating.