Pathological Demand Avoidance May Be Why Your Autistic Kid Won’t Follow Directions

It’s not that they don’t want to; it’s that they can’t.

by Isobel Whitcomb
Originally Published: 
A child throwing a tantrum being held by their mother.

It’s normal for kids to resist demands. All kids, for instance, go through a natural stage in development where their default response to any request is “no.” Even past toddlerhood, your kid might continue to dig their heels in on doing homework, eating healthy foods, or getting up in the morning. But for some autistic kids, refusing to do what their caregivers say continues long past toddlerhood and goes beyond the occasional mealtime battle. Instead, these kids go to great lengths to evade every request made of them.

“These range from teeth-brushing and getting dressed to getting out of bed, doing homework, responding to questions, responding to their own bodily functions,” says Harry Thompson, co-founder and former director of U.K.-based nonprofit Neurodivergent Education Support and Training.

Shortly after the publication of this article, a number of women came out with allegations of abusive behavior and grooming against Harry Thompson, who then resigned from Neurodivergent Education Support and Training. A number of prominent people and organizations in the PDA community have since cut ties with Thompson.

There’s a diagnosis that describes these characteristics: pathological demand avoidance, or PDA (although many autistic people and professionals working with them prefer the term pervasive drive for autonomy — but more on that later.)

PDA kids are neurologically wired to dodge demands — and they’re adept at doing so. Their responses to requests range from simple refusal, to elaborate storytelling, to physically fleeing the scene. But their refusal to do what is expected of them isn’t stubbornness or a desire to manipulate. It’s extreme anxiety triggered by perceived loss of autonomy.

PDA was first recognized as a “profile” or subtype of autism 40 years ago by U.K. psychologist Elizabeth Newson. Today, it’s just starting to gain recognition in the United States — although it’s not listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM).

PDA kids often have a hard time at home, at school, and in the wider world. They might receive frequent discipline, be suspended from school, or even expelled. Frequent conflict at home can take its toll on the whole family, says Donna Henderson, a Maryland-based neuropsychologist and author of the book Is This Autism? A guide for clinicians and everyone else.

“These are parents who have tried everything — these parents have gone through different therapists, and they've tried medications with their kids, and they've tried parenting classes, and they're exhausted,” Henderson says. The result: a kid who sees themselves as a “bad” kid, and parents who see themselves as “bad” parents.

Of course, PDA kids aren’t bad — and parenting them doesn’t have to turn your home into a war zone, Henderson says. The first step to understanding this is to deconstruct the term “Pathological demand avoidance,” Henderson says. “The term ‘pathological’ never helped anyone…It’s way too negative,” Henderson says. “But even more important is the term ‘demand avoidance.’ The core of PDA is not demand avoidance. It isn't.”

Henderson prefers the term “pervasive drive for autonomy,” coined by autistic activist and consultant Tomlin Wilding. That’s because PDA, at its core, is an intense anxiety about a perceived loss of autonomy. Resistance to demands isn’t belligerence. Instead, PDA people experience demands as a threat to their autonomy — and therefore to themselves.

So how do you tell whether you’re dealing with PDA or run-of-the-mill childhood demand avoidance?

One hallmark sign of PDA: refusing demands even when the child actually wants to do that thing. For instance, a kid might talk non-stop about how much they love their new soccer team. But when you remind them to grab their cleats and jump in the car, they suddenly will do anything to get out of practicing their favorite sport.

Then there’s the remarkable lengths PDA kids will go to regain a sense of autonomy. They might change the subject, negotiate ("I'll brush my teeth if you put the toothpaste on"), make excuses (“My mom won’t let me”), feign incapacitation (“My hands won’t work!”), physically go limp, or withdraw into fantasy. “They might become a dog or a cat and start growling, biting, or hissing,” Henderson says. The last resort: an utter meltdown.

These social strategies point to another characteristic that sets PDA kids apart from many of their non-PDA autistic peers, Thompson says. PDA kids have excellent social skills, at least superficially. They have no trouble making eye contact or following social niceties. They often are very comfortable with imaginative play. As a kid, Thompson, who is autistic and PDA, was described as the family radio. “I used to just jump in and out of characters and roleplay, mimic accents, method-act even,” says Thompson.

Beyond these superficial social skills, however, PDA kids struggle to understand social hierarchy. “These kids often will speak to a teacher as if they themselves are another adult. It’s almost as if they don’t know that they’re a kid,” Henderson says.

Finally, PDA kids have dramatic mood swings, which are usually triggered by demands. These demands are perceived as very real sources of danger — each demand floods a PDA kid’s system with adrenaline and cortisol. “They essentially go into fight-or-flight,” Henderson says. Many times, the next demand comes before the PDA-er has a chance to calm down from the last one: get ready for school, open your books, go to lunch, please sit still in class. “They've learned that it's only a matter of time before the next demand comes along, and they're sort of hypervigilant to danger. They're just swinging from mood to mood. It's really hard,” Henderson says. “At its core, it’s extreme anxiety.”

So what can a caregiver do to help a kid like this? The first thing, Henderson says, is to “practice radical acceptance.” Unlearn the idea that the refusal to comply with requests is “bad” — then get all the adults in your kid’s life, from babysitters to teachers, on that same page.

Talk to PDA kids like they’re your equal. That might mean compromising your authority as an adult or even a professional, Thompson says. For example, Henderson would never introduce herself as “Dr. Henderson” to a known or suspected PDA-er. Instead, she’d use her first name, Donna, and speak to that person like a peer.

Monitor your own communication for subtle demands — you’d be surprised just how many sneak into what we say, Thompson says. “How are you?” demands a specific response. “I love you” demands an “I love you too.” “What’s the plan for today?” demands productivity.

Of course, life is full of obligations, from showering to eating nutritious food to getting through the school day. Give PDA kids a chance to find intrinsic sources of motivation. For example, Thompson remembers one young PDA girl he worked with who went for weeks without showering, until she saw her older sister using a curling iron. When the younger sister ran to her mom asking to curl her own hair, her mom was able to explain that curling irons don’t really work on dirty hair. Newly motivated, the young PDA-er jumped in the shower. Then there was the young boy with PDA who wouldn’t learn how to read — until his Xbox broke and he couldn’t understand the instruction manual. “He came down and said, "You need to teach me to read right now,”” Thompson says.

You’re allowed to have your own limits, Henderson adds. For example, if your kid doesn’t want to eat dinner with the family, you don’t have to cook more food at midnight. It’s okay to set a rule where the Xbox stays off until homework is done. It’s just important that limits aren’t framed as threats or bribes. The goal isn’t to coerce your child into eating or doing homework — instead, you’re setting boundaries and modeling natural consequences.

Finally, a good way to reduce stress at home is to simply reduce the number of battles by reducing unnecessary asks, Henderson says. Kids don’t tend to go on hunger strike, so don’t try and make your child eat at set mealtimes. Instead, keep healthy food that they like in the house. Homework isn’t really necessary for young kids, so skip it, Henderson says. For older kids and teens, depersonalize demands with schedules and planners — then let them take care of the rest, she adds.

None of this is easy. That’s especially true when you’re receiving the message from other parents and teachers that you’re being too lenient with your child and that they lack discipline. “What they don’t know is that discipline and demands turn home into World War III,” Henderson says. The most important thing to remember: “You should trust your instincts with your child, and trust your experience.”

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