The PDA (Pathological Demand Avoidance/Persistent Drive for Autonomy) profile of Autism (high maskers/demand avoidant/often missed profile)
I previously made a post about PDA on r/autism. which some people shared was helpful for them. I am a psychologist, late diagnosed autistic, and have a PDA profile. I have self diagnosed this profile, as there is little awareness about PDA in my country (Aus). It’s a profile that’s recognised in the UK but not the US. There is a fair amount of contention about the profile even within the autism community. I work with many adults with this profile. In my work I have been developing a greater understanding of the unique experiences of such people, and how these concerns can be misinterpreted as being ADHD, or just being an a*hole.
PDA is commonly referred described as an anxiety-driven need for control, but I would prefer to describe PDA an involuntary response to threats to autonomy. PDAers need to do things their own way, and find many everyday things demanding, including things that they “should” or “want to” do.
There is an interesting pattern I have started to see in PDAers, and that is having difficulty with arbitrary hierarchy, conformity and authority. In contrast to the profile described in a child context, PDAers I have met typically have an extremely strong sense of ethics, a desire to create new systems and question existing systems that are harmful. These people are very independent, often misunderstood, and have extremely variable profiles of functioning. PDAers tend to have fairly good social awareness, and more often than not, interests in some aspect of social structures. My interests are psychology, sociology, philosophy, history, politics, revolutions, neurodiversity, and other matters of understanding humans systems (individual and broader). A person who is very good at masking, and has a special interest in people/society, is going to puzzle a lot of people in the autism assessment space.
Whether this profile occurs to some extent in all autistic people, is an open question. I do see some relation between RSD and PDA; where RSDers tend to turn against themselves, and PDAers turn against the world. I also see RSD and PDA in the same person, and yes indeed this is a difficult situation.
Why is this important? Because a person with PDA will not respond to typical strategies. Calendars, reminders, people helping us, giving us guidance, breaking it down, etc. all serve to trigger the very issue: we need to do these things ourselves. Even the systems we make to constrain our autonomy backfire. Many people I meet in this profile have dug themselves deep into a pit of their own self-shame and struggle to validate the very real, and very unique experience it is to be a PDAer. And so many day to day things trigger PDA; gentle suggestions, advice, needing to get up and drink water, the demand of masking, a text message, wearing acceptable clothing, even advertisements! And PDAers struggle to grapple with the pockets of capability that occur when we can be - really be - autonomously engaged in interests - in those rare instances. Add to this the layer of intense ethical and moral standards, and you have a fun combination anger, guilt, and confusion.
Here is the criteria I have created from my observations.
Persistent Drive for Autonomy (also referred to as Pathological Demand Avoidance)
- A persistent (pervasive, extreme, all-encompassing) need for autonomy, self-determination and as evidenced by the following;
a. A extremely strong need for autonomy, either evidenced through observation or self-report; such as stating autonomy is the most important thing, a need to do things “my own way”, “no let’s do it my way”, “I know a better way”. For children or those that are high maskers, may be evidenced only in characteristics described below
b. A pattern of either disengagement on tasks imposed by others, or high masking during this engagement (engagement on the outside is inconsistent with reported enjoyment and desire to continue; agreeing to do something and seeming enthusiastic then not doing it)
c. Strong, involuntary emotional threat responses in the context of perceived demands (can be implicit and ever-present, such as attending school and work; or explicit such as a direct request or direction or suggestion) on the person’s autonomy, which may be expressed as; anger, aggression, rage, anxiety, fear, desperation, and at its extreme, meltdown (panic). In high maskers, may be experienced as stress/confusion and built up over time, and ‘explode’ in unexpected ways to seemingly ‘small’ triggers. Intensity of emotions increases with anxiety.
d. Anxiety driven behaviours expressed in attempts to maintain or regain autonomy including: avoidance, fawning (agreeing/people pleasing) followed by avoidance, quitting, ‘social manipulation’ such stating untrue information in the attempt to avoid demand, entering into role-play (‘being silly’), distraction, making jokes, ‘disruptive’ behaviours, stating they have sickness/injury with no evidence of this occurring, ‘controlling’/directing the actions of others, doing things in their own way, delaying or procrastinating. Intensity of behaviours increases with anxiety.
e. Failure of traditional “strategies” to engage the person, e.g., positive reinforcement or praise, punishment, routine, explaining things again, giving warning, doing it for them, threats, enticing the person, compliments, encouragement, advice, guidance, “breaking it down”, or bribe
f. Improved functioning and engagement in when the person is actively involved in decision making, engaged in interests, unstructured/comical/absurd contexts, and contexts which can be freely created by the person
Astute social awareness, interest, and/or concern, e.g., concern about social matters, advocacy, the rights of others. May have a ‘special interest’ in a certain person, people, society, social systems, studying and understanding people, e.g., social work, psychology, anthropology, education, criminology, or human sciences.
To distinguish from ODD/conduct disorder: The need for autonomy extends to others, which may be expressed as empathy/hyper-empathy towards others (or animals) being treated unfairly. The person experiences guilt, shame, sadness and embarrassment (may say “I hate myself”) about behaviours during meltdowns, though the demand to express an apology may conceal their true feelings.
This pattern has been observed since early childhood and did not emerge in the context of a specific stressful event.
Note. In some, may have a pattern of fluency and comfort in verbal and non-verbal social communication including talkativeness and humour; which may be an expression of higher masking/overcompensating. In some cases, may enjoy role-play or escaping in imagination as an expression of creating an inner autonomous world. May be genuinely highly attuned to social structures and have a penchant for detecting and challenging hierarchy and authority due to heightened perception of its arbitrary and unfair nature.