Weekly Thoughts #14: Living with PDA as an autistic adult

PDA is the acronym for Pathological Demand Avoidance, though it alternatively stands for Persistent/Pervasive Drive for Autonomy, a term increasingly preferred by some autistic advocates, as many argue that this demand avoidance is rational and not pathological in essence. People experiencing this are instinctively avoiding something that is causing a great deal of distress to their neurology.

This understanding shifts the perspective from viewing PDA solely as a disorder to recognizing it as a meaningful response to overwhelming circumstances. It highlights the importance of acknowledging and validating the experiences of those who struggle with these intense feelings of demand avoidance.

Although PDA is widely acknowledged as a neurodivergent trait that is experienced by and observed in many autistic people, it is not included in the Diagnostic and Statistical Manual of Mental Disorders (DSM) or the International Classification of Diseases (ICD).

In order to be formally recognized, a sufficient amount of consensus and clinical history needs to be present, and as a fairly newly proposed condition (it was first proposed in 1980), PDA has not met these standards as there is very little research into it and the research that does currently exist is overall of low quality.

The lack of formal recognition also impacts the availability of resources and support tailored to individuals with PDA. Many practitioners are still unfamiliar with the nuances of PDA, which can result in inadequate or misaligned support strategies.

PDA presents itself in different ways, though a commonality is that individuals are driven to avoid everyday demands and expectations (including things that they want to enjoy) to an extreme extent. While everyone has probably experienced some form of demand avoidance or drive for autonomy in their lives, PDA is a marked and persistent resistance or drive that is not so easy to control.

Such demands placed upon autistic people can lead to situations that trigger anxiety or sensory overload, as well as causing disruption to routines, such as transitioning from one activity to another, and activities or events that they don’t see the point of or have any interest in.

The impact of these demands can also affect an individual’s social interactions and overall quality of life, making it difficult for them to engage in activities that others might find straightforward or enjoyable. Understanding the specific triggers and manifestations of PDA is crucial for developing effective support strategies.

In terms of the demands, it makes little difference whether they are direct, indirect, implied, or internal demands. PDA is with regards to the individual perceiving the request as a demand, which can result in PDA becoming apparent.

These demands are often met with resistance in several different forms, including distraction, procrastination, aggression, excuses, refusal, diversion, passivity, and/or withdrawal.

There can often be an overwhelming feeling of anxiety when you realize that a demand cannot be avoided or that these forms of resistance have been exhausted. This can thereafter result in meltdown, shutdown, or panic, potentially including aggression. It is paramount that others realize that these states are usually out of the person’s control.

Recognizing these responses as manifestations of the intense stress experienced due to perceived demands can lead to more empathetic and supportive interactions. Tailoring approaches to each individual’s unique experiences and needs is key to providing effective support.

Thinking about PDA as ‘Pervasive Drive for Autonomy’ as opposed to ‘Pathological Demand Avoidance’ makes much more sense to me personally, as a lot of my major frustrations and subsequent depressive spells have been a clear result of a lack of autonomy in life. I despise the control governments across the world hold over their people and how many policies are in place that not only prevent the progress of various groups of people but also actively hinder progress.

Many autistic people are known for their acute sense of justice and being very passionate about their views, especially when something is perceived as unjust, and I am no different. I do not and cannot respect laws that do not respect me as an individual, nor those that affect others who fall into a minority group.

This frustration with systemic issues and a desire for greater autonomy and respect can drive advocacy efforts and a push for societal change. By working towards greater understanding and inclusivity, it is possible to create a more equitable environment for everyone.

I like to be in control of my own destiny, and when I think about how much better I could be doing without the level of restrictions placed upon me, it ultimately leaves me feeling helpless, as there is very little I can do on a personal level other than advocate for much-needed change that might never happen in my lifetime.

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