Many people who identify as a PDAer have said that more common ways of describing autism do not fit with how they see themselves. Some say they would not have had access to an autism diagnosis if the professional had not viewed them through a PDA lens. PDA is not currently listed as a diagnosable condition in the DSM (Diagnositc and Statistical Manual). However, some professionals, autistic individuals and family members refer to it as one way that autism can be expressed.
The original wording, “pathological demand avoidance” is now disliked by many people because “pathological” can imply that something is wrong with the person themself (rather than a mismatch between environmental demands and a particular neurotype). “Extreme demand avoidance” and “persistent drive for autonomy” are two preferred alternatives. You might ask, “Don’t most autistic people experience demand anxiety?” That appears to be so. At the same time, many PDA-identified people, family members, and supporting professionals say that PDA experience of demand anxiety is different in intensity, frequency, and/or kind. This claim has led to some controversy.
Is PDA Different?
Definitions and criteria for autism continue to change, according to changing perspectives of professionals in the field and according to developing identities of actually autistic people. Below are characteristics commonly attributed to a PDA profile. As with all human expression, there is an abundance of variety. As a result, all of the characteristics will not be true of every person who identifies as a PDAer, and people who don’t identify as a PDAer might have some characteristics. That said, as understanding of autism grows, clear lines between PDA profile descriptions and other expressions of autism begins to blur.
- Many PDAers describe preferring spontaneity over routines, since routines can lead to anticipation of upcoming demands. At the same time, reducing predictability and consistency can also reduce context cues that help with interpretation of confusing situations.
- PDAers are described as being intensely interested in specific people rather than specific topics or things.
- Imagination is typically said to be a strength. Immersion in fantasy is often a creative way to interact, problem solve and respond to demands, especially when facing challenges in these areas. For example, when a parent asks their child to put toys away, the child might reply, “Mr. Hand says he can’t pick them up.”
- Internal demands (what someone tells themself to do) can provoke anxiety for many who identify as a PDAers, even for activities the person enjoys or wants to do. For example, someone who is hungry might say to themself, “Let’s get some dinner.” Then they might have a lot of difficulty getting themself to the table to eat.
- Environmental cues can be a trigger. For example, seeing the table set for dinner can be experienced as an anxiety-inducing demand.
- Direct praise, sticker charts and other kinds of positive reinforcement can be experienced as a demand to do what is being reinforced. This can lead to an escalated anxiety response.
- Some autistic people might break social conventions about how to speak to authority figures because they find the rules to be confusing. However, when PDA-identified people communicate with an authority figure in the same way as with a peer, it is usually described as being related to a high value placed on treating everyone as equals, regardless of age and status.
Are these descriptions of a particular neurotype, the result of an unusually high degree of trauma leading to an extreme degree of demand anxiety, or a combination of factors? There is no consensus at this time.
Demand Anxiety and A Low Demand Approach
A low demand approach, such the one described below, can go a long way towards creating an environment where those who experience themselves as PDAers can thrive. At the same time, demand anxiety is a reality for most autistic people. Increasing understanding of this is leading to acceptance of a low demand approach to supporting and connecting with autistic individuals of all expressions. A low demand approach involves:
- fostering trust;
- greatly reducing demands;
- explaining why it is beneficial to do something instead of just stating what to do;
- modeling desired behaviour;
- collaborating together to decide what to do;
- recognizing signs of escalating anxiety;
- identifying what leads to anxiety and addressing the causes as early as possible;
- being flexible, and having a back-up plan;
- picking your battles.