Having two children with vastly different experiences of Autism, I always tell people that it is easy to make jokes about Asperger's but PDA is something you don’t joke about. Pathological Demand Avoidance (or Extreme Demand Avoidance) is a profile of autism that is characterized by an intense, pervasive drive for autonomy and a heightened sensitivity to demands that threaten that autonomy.
This demand avoidant behaviour is rooted in an anxiety-based need to be in control. The anxiety and fear control every aspect of their daily life, creating a need to control everything and avoid all daily demands.
Life becomes so scary and overwhelming that they often mix reality with fantasy to create a world that they feel safe and competent. This usually means refusing to follow anyone else’s guidance, since to do so leaves them vulnerable to uncertainty and increased anxiety. This is not just common anxiety, but a deep-rooted fear.
Types of demand
According to the UK National Autistic Society, some examples of the ‘demands of everyday life’ that a person experiencing demand avoidance may resist (note that the demand does not need to be something unpleasant to trigger distress) are:
- a direct demand (an instruction, such as ‘brush your teeth’, ‘put your coat on’ or ‘complete your tax return’)
- an internal demand (for example willing yourself to do something, or bodily needs such as hunger or needing the toilet)
- an indirect or implied demand (including any expectation, such as a question that requires an answer, food in front of you that you are expected to eat, or a bill arriving that needs to be paid).
Forms of resistance
They continue to note the forms of resistance, including:
- Giving excuses (which may be fanciful – for example, 'I can't because I am a tractor and tractors don't have hands' or 'I can't because my legs are broken' (though they aren't))
- Distraction or diversion (such as giving affection or compliments; changing the subject; making noise that makes further discussion difficult; or creating a situation that needs more immediate attention, for example, by knocking something over)
- Point blank refusal (saying "No" and not entering into negotiation; physically resisting)
- Passivity/withdrawal (becoming floppy; curling up into a ball; not responding; walking/running away; withdrawing into fantasy)
- Aggression (usually as a last resort, when other forms of resistance have failed. For example, pushing someone or throwing something away; hitting or kicking; biting. Aggression may be a form of resistance, but it may also be a panic response to overwhelming anxiety.)
The overwhelming anxiety of realising that a demand cannot be avoided, or that these forms of resistance have been exhausted, may result in meltdown or panic, potentially including aggression. These states are usually out of the person's control.
Dr Megan Anna Neff of Neurodivergent Insights describe some of the social characteristics of PDA as:
Appears sociable on the surface: PDAers may appear sociable on the surface, and difficulties in social communication and understanding may be less obvious than in typical autism presentations. But they are likely to struggle to understand or perceive social hierarchy and may want to be co-teachers, and co-parents and have the same social role as authority figures.
Experiences excessive mood swings and impulsivity: Individuals with PDA experience excessive mood swings and impulsivity and have extreme emotional reactions. Some individuals become quiet/withdrawn, while others become externalizers and display obvious emotional reactions. Their flight, fight, freeze, or fawn responses are outward representations of the brain and body's instinctual response to physiological stress.
‘Obsessive’ behaviour, often focused on other people: PDAers often exhibit 'obsessive' behaviour that is focused on other people, and they may have developed passionate interests and be able to be hyper-focused. This 'obsessive' behaviour is often social in nature and may show up as extreme love or hate. Obsessive behaviour may also present as obsessive behaviour with 'social' or 'performance-based' demands due to acute anxiety and/or because a demand conflicts with an intense need to be seen as independent and undependable.
Persistent Drive for Autonomy
Several voices in the Autistic community are campaigning to have this subtype of Autism to be re-named Pervasive Drive for Autonomy, as the term Pathological Demand Avoidance assumes that the person is purposefully being controlling and manipulative and ignores that anxiety is the root cause.
Dr Donna Henderson argues that the core of PDA is an anxiety-driven need for autonomy. PDA causes someone to avoid demands and expectations for the sole purpose of remaining in control. When faced with a demand (even a really minor one), PDAers can have extreme reactions.
Tomlin Wilding also explains that PDA is named for just one aspect of behaviour that is experienced as part of it. He does agree that PDAers experience a "pathological" or distinct form of demand avoidance, where other more typical forms do exist. This is one aspect of the profile is just one aspect of it and it is created by a fundamental driving force in a PDAer, and so are the other aspects of behaviour that indicate a PDA profile.
Naming it for just one aspect of behaviour stigmatises that behaviour and trivialises the other behaviours and traits involved in the neurotype. It thoroughly limits peoples' understanding of the experience, and ignores or misunderstands, the actual driving force behind the PDA experience.
The overriding feature of this neurotype is an intense and pervasive need for personal freedom and self-determination. This is autonomy. PDAers can only be autonomously motivated, and will seek autonomy at every turn, whilst resisting any breach of autonomy, including, but not limited to demands. The PDAer needs to live their life according to their own rules, their own code and compass, and would really prefer the world changed to fit that. This makes PDAers great activists and revolutionaries, people who lead and inspire others and ultimately pretty awesome people, except when they have to live under other people’s rules, expectations and demands.
By viewing PDA through this lens, the drive for autonomy rather than demand avoidance, the characteristics of PDA also look different: (From At Peace Parents)
Survival Drive for Autonomy:
Their need for autonomy is a survival need and drives outward behaviour. This survival need can override other needs like hunger, toileting, sleep, movement, and safety. Remember, the cause/effect isn't always immediate. Overriding the threat response over and over builds to a level of anxiety where they can have "regressions," become incapacitated or have constant meltdowns. It is a cumulative effect which makes the outward expression of behaviour confusing at times.
"Equalizing" behaviour results when boundaries, rules, or expectations are set and when the PDA brain perceives a loss of autonomy or lack of equality with a situation, people, or person. This is the outward expression of an internal nervous system response that is automatic and autonomic. The equalizing behaviour results from the brain and body trying to get back into a place of perceived equality, however they may "overshoot." They can "mask" this behaviour, but there is always a cost.
Equalizing behaviour can also be turned inward, which may manifest as self-harm, eating disorder, or OCD-like behaviours in more introverted or "freeze/fawn" expressions.
"High Masking" Autistic:
PDA children often have two different "versions" of themselves depending on context. For example, "fine" at school and "explosive" or "shut down" at home. PDA children are "high masking" Autistic - they fluently imitate neurotypical social norms and override their threat response at school or with grandparents. When they come home or to their safe space, they may show completely different behaviour and appear like a different child.
Constant Need for Autonomic Nervous System Coregulation and Undivided Attention:
PDA children need constant co-regulation and undivided attention, or they will become dysregulated and experience an internal nervous system response, even if it isn't outwardly obvious (remember, "High Masking"). The PDA child needs to consistently receive signals of safety so that their nervous system doesn't go into fight, flight, or freeze throughout the day. Co-regulation can be provided by a safe person who is regulated and can signal safety with tone, facial expression, body movement, and physical proximity. This may present differently for introverted expressions of PDA.
Unpredictable Nature of Dysregulation and Meltdowns:
Dysregulation and meltdowns for the PDA child often "appear out of nowhere." It is important to realize that the final particular stimuli is often the "straw that breaks the camel's back" and the response can appear "disproportionate." Dysregulation, equalizing behaviour, shutdown, and meltdowns are often in response to an accumulation of stress from the PDA child spending a significant amount of time (days, weeks, months) overriding their threat response by masking consistently in an environment outside of the home (at school, with grandparents. etc.)
Managing PDA in the context of a drive for autonomy
At Peace Parents also provide some awesome ways for teachers and caregivers to manage PDA in this context:
Mindset Shift: "Compliance" in the moment does not equal long term progress:
Teachers think of "success" with a student as the degree to which they move through the learning plan, follow instructions, comply with classroom rules, and develop competence in a particular academic topic, whether it is learning to read, write, or do math. None of this can happen if the PDA child is in their "survival" brain and having a panic response. To ensure long-term success for a PDA child and their learning, the three things to focus on are trust, connection, and autonomy (meaning allowing them to opt-out in the moment if they appear to be resisting and avoiding something). Paradoxically, allowing them to opt-out will make them less resistant in the future and more likely to succeed in learning.
Allow for as much freedom, choice and autonomy as possible:
As soon as PDA child senses an agenda, pressure, or your anxiety, their threat response will activate and it will make them LESS likely to engage and degrade trust. Anytime there is resistence or diversion from plans from a PDA child, it can be an opportunity to offer choice and flexibility. This can be simple, like allowing them to begin in the middle of the worksheet, rather than at the beginning. It could be simply letting them use the bathroom as much as they need or to work on another lesson if the one presented to them is activating their nervous system. Finally, it may be necessary to lower demands in and outside of the classroom for the PDA child, for example, allowing them to opt-out of homework, activities, fundraisers, etc., so they have nervous system recovery time at home after school.
Understand that most PDA children don't "look classically Autistic."
First, PDA children often don't "look autistic" because their support needs are most related to the nervous system, not social communication differences. Second, "masking" is one of the things that is MOST confusing for teachers because the PDA child often appears very typical and well-behaved in the classroom, but then parents report very difficult behavior and trouble accessing basic needs (toileting, eating, sleeping, or hygiene) at home. Most PDA children are "high masking," which means they internalize their threat response while at school. The PDA child still needs accommodations at school, because the nervous system activation is cumulative and over time can prevent the PDA child from coming to school, leaving the house, and accessing other basic needs. This is what makes it a disability. For parents, tracking nervous system activation and regulation is like tracking insulin levels for a diabetic child.
Humor can be a very powerful tool to de-escalate the threat response, although it may feel unnatural to use in a moment of tension or when the PDA child has spoken in a way that feels rude or defiant. Think of it as an opportunity to notice the indicator of their internal experience (Oh, there is the threat response!) and to jujitsu the energy to get back to a place of connection. For example, if they growl, shout, or "rudely" correct you, you can say "Oh my goodness, did I mess up again?" and blame it on yourself. You can also use self-deprecation, make deliberate mistakes, mess up words, call yourself silly, and try slightly inappropriate bathroom humor to break the tension and show you are also a flawed human.
“The single most important thing to a PDA individual is their autonomy; to decide things for themselves and be in complete control of what they do and where they are going. We need equality and fairness; it doesn’t make sense in our brains why everyone isn’t on the same level and to be treated and respected equally. This is often a cause of why we buck against authority figures so much, aside from rejecting anyone who tries to tell us what to do!”