Pathological Demand Avoidance: Research Review | Contributions of Anxiety & Autism

Quick note: The following research review uses the term Extreme Demand Avoidance (EDA) instead of Pathological Demand Avoidance (PDA). This current post will use the acronym EDA. 

Research Article Title: Understanding the Contributions of Trait Autism and Anxiety to Extreme Demand Avoidance in the Adult General Population

A Question

Have you ever found yourself avoiding a task, even when you know it needs to be done? For some, this isn't just procrastination, it could be a manifestation of Extreme Demand Avoidance (EDA). Recent research sheds light on this complex profile, highlighting its strong connections to anxiety and autistic traits.

What is Extreme Demand Avoidance (EDA)? What are the FUNCTIONS of the expressed behaviors?

At its core, demand avoidance behaviors are often described as learned coping mechanisms. They develop in response to extreme anxiety triggered by an aversive stimulus or demand. By avoiding or delaying an imposed demand, a person can regain a sense of control over the situation, which in turn reduces their anxiety. This reduction in anxiety then reinforces the avoidance behavior, creating a cycle. Initially, avoidance may be limited to aversive tasks, but it can eventually extend to activities a person with a EDA profile typically enjoys 

Adults with an EDA profile frequently report very high levels of anxiety, often describing it as their primary emotion. They may experience a lack of control as catastrophic, feeling that "If I feel out of control everything goes very wrong, very quickly". This avoidance, ironically, is likely to increase anxiety in the long term, creating a self-perpetuating and potentially amplifying cycle of anxiety and avoidance, similar to what is seen in research on procrastination. Studies have shown that anxiety, especially intolerance of uncertainty, is associated with demand avoidance behaviors in children, even when controlling for an autism diagnosis.

EDA and Autism: Similarities and Differences

The relationship between EDA and autism is complex, with both similarities and distinct differences.

Both autism and EDA profiles share characteristics such as:

• Anxiety
• Challenges with effort initiative
• Difficulties with performance feedback
• A heightened need for control
• Social communication challenges

However, there are also key differences:

• Individuals with an EDA profile may engage in socially manipulative behaviors.
• They might use role-play as a coping and avoidance mechanism.
• They are often influenced more by social factors compared to what is typically described in autism.

How Does EDA Develop and Persist? Who does it affect?

EDA is thought to emerge in childhood and can continue into adulthood. Early descriptions of EDA came from experiences at a specialist clinic assessing children with atypical autism, and follow-up studies found that many of these individuals remained highly demand avoidant in adulthood, though some had become less so. Anecdotal evidence from clinicians also supports the continuation of EDA into adulthood.

It's believed that EDA traits may decrease as a child gets older, possibly due to improvements in skills like self-regulation, communication, and the ability to self-advocate. While it's possible this trajectory of diminishing behaviors continues throughout adulthood, some research has found no relationship between EDA traits and age in adults. Interestingly, anxiety disorders in the general population tend to decrease with age, which could also play a role in reducing demand avoidance behaviors if anxiety is a primary driver.

Regarding gender, initial ideas suggested an equal sex ratio for EDA, supported by some studies. It has also been suggested that EDA might represent a more typically female autism profile, which would align with a more balanced sex ratio compared to the typical 3:1 male-to-female ratio seen in autism. However, findings on sex ratios in EDA are inconsistent, with some studies reporting higher traits in women, and others in men. Given these mixed findings, it's considered important to account for age and sex in investigations of demand avoidance traits.

Current Research Sheds Light on Predictors

To better understand the relative importance of autistic traits and anxiety in predicting demand avoidance in the adult general population, White et al., 2023 conducted two studies. Recognizing the lack of clear diagnostic criteria for EDA, they measured demand avoidance traits in the general population and included autistic traits and anxiety in their models, controlling for other emotional symptoms like depression and stress. 

Study 1 Findings: The first study, involving 267 UK residents, indicated that anxiety was the most important predictor of demand avoidance traits. Autistic traits were found to be a weaker unique predictor than expected and were even weaker than depression and stress in some analyses. While men reported significantly higher demand avoidance than women, sex was not a particularly useful predictor when accounting for inter-correlations.

Study 2 Findings: Due to the relatively small sample size and the use of an abbreviated autism measure (AQ-10) in Study 1, a second, larger study (549 UK-based participants) was conducted using the full Autism Spectrum Quotient (AQ). The results of Study 2 suggested that both autistic traits and anxiety are comparably important when predicting demand avoidance.

Overall Conclusion: Taken together, these studies underscore that both autism and anxiety are significant factors contributing to Extreme Demand Avoidance. This research supports previous findings linking anxiety and EDA, particularly in children. Understanding these connections is crucial for developing more effective support strategies for individuals experiencing EDA.

Researchers: White, R., Livingston, L.A., Taylor, E.C. (2023) Understanding the Contributions of Trait Autism and Anxiety to Extreme Demand Avoidance in the Adult General Population. Journal of Autism & Developmental Disorders, 53, 2680–2688. https://doi.org/10.1007/s10803-022-05469-3.

Pathological Demand Avoidance: What does the research say? Part II

Continuing the Conversation on Demand Avoidance

In my previous post, I discussed the basics of Pathological Demand Avoidance (PDA).

Pathological Demand Avoidance (PDA) is a relatively new term for service providers in the United States. PDA is a behavioral profile often manifesting as a strong resistance to everyday demands and expectations. 

Before we go any further, let's take a moment to better understand Demand Avoidance versus Pathological Demand Avoidance (PDA) (also known as Extreme Demand Avoidance and Pervasive Drive for Autonomy). 

Everyone experiences demand avoidance from time to time. Individuals may express demand avoidance by making excuses to avoid tasks, procrastinating on requests, changing the subject to distract from a demand, feigning illness to get out of something, strategically withdrawing from conversations when pressure is applied, or using passive-aggressive tactics to resist expectations; essentially, finding ways to sidestep requests or obligations that feel uncomfortable or overwhelming, even if they are not consciously trying to be defiant. These behaviors are usually not expressed through heightened, reactive emotions that may cause a disruption at home, at work, or in social life.

In summary, the delineating line between everyday human avoidant behavior and Pathological Demand Avoidance (PDA) lies primarily in the severity, pervasiveness, underlying motivation, and impact on daily functioning.

Pathological Demand Avoidance (PDA) often appears illogical or counter-productive, causing significant disruption to everyday functioning. Individuals expressing PDA behaviors may exhibit dramatic reactions to a request or a demand. The avoidance impulse can even stop individuals from doing things they enjoy. PDA is about avoiding the notion of a demand itself rather than avoiding the action. People avoid things that they feel they ought to do through their own personal expectations, not just things that have been asked of them.

Autistic young adults seeking employment have faced difficulties due to a number of factors such as locating & maintaining a job due to anxiety, decreased self-determination, interviewing challenges, access to transition services, lack of understanding in employers, and autism-related behaviors.   

Autistic young adults with a PDA profile may face challenges during transition to adulthood, particularly in accessing appropriate support services and achieving successful employment outcomes.

PDA Examples & Scenarios

A few examples of Pathological Demand Avoidance (PDA) behaviors an individual may exhibit include: Constantly resisting or avoiding everyday requests, using manipulative tactics to sidestep tasks, extreme procrastination, sudden mood swings when faced with demands, excessive need for control, difficulty with routine changes, appearing superficially sociable while lacking depth in relationships, and using elaborate excuses to avoid obligations, and/or stemming from an underlying anxiety about feeling controlled by others. 

Specific scenarios that might indicate PDA in an adult may include:

Work challenges 

• Consistently missing deadlines or finding ways to avoid completing assigned tasks, even if they are important. 

• Frequently changing jobs due to feeling overwhelmed by work expectations or authority figures. 

• Using elaborate excuses to explain why they cannot meet deadlines or complete tasks. 

Social situations 

• Canceling plans at the last minute, often due to perceived pressure or feeling like they are being "forced" to attend. 

• Appearing friendly and engaging but withdrawing when asked to commit to specific plans.

• Difficulty maintaining friendships due to unpredictable behavior or sudden changes in mood.

Daily life

• Refusing to do basic chores or self-care activities like showering or eating unless explicitly reminded multiple times.

• Engaging in lengthy negotiations or arguments to avoid doing something they are asked to do.

• Becoming highly agitated or emotionally distressed when presented with a direct request, even if it is simple 

Coping mechanisms

• Using humor or distraction tactics to deflect attention away from demands 

• Appearing overly agreeable initially but then finding ways to sabotage or undermine plans later on 

• Engaging in impulsive behavior to avoid focusing on responsibilities

What Does The Research Say?

Now, let’s dive into what current research reveals about this challenging area, and what it means for those who experience it, as well as those who support them.

Understanding the Nuances of PDA

Recent studies highlight that PDA isn't simply about being "defiant" or "non-compliant". It's rooted in anxiety and a need to control situations. Research shows that individuals with PDA often experience:

• Pervasive anxiety: This anxiety significantly impacts how they navigate daily life and demands.

• Bidirectional social challenges: Interactions with others can be particularly challenging.

• Difficulties negotiating life demands: The everyday expectations of life can become overwhelming.

• Extreme mood variability: Switching between seeming cooperative and highly resistant quickly.

One study found that individuals with PDA displayed comparable levels of autistic traits and peer problems to those with autism spectrum disorder (ASD). However, their emotional symptoms exceeded both the ASD group and a group with conduct problems and callous-unemotional traits. This underscores the intense emotional experience that underlies demand avoidance.

It's vital to move beyond labeling behaviors and instead try to understand the drivers behind them. What might look like stubbornness is often a response to feeling overwhelmed. One study highlighted the need for trust and safety in creating a supportive environment for those with PDA.

Implications for Transition Services and Beyond

Current research sheds light on areas that may be affected in young autistic adults with a PDA profile:

• Transition Services: For young adults on the autism spectrum, those with PDA traits may struggle with the transition to adulthood and independent living. Transition service providers should be aware of PDA, as this will help them support clients with or without a formal diagnosis.

• Employment: The ability to learn and use daily functioning skills are key to employment success, and this may be exacerbated by PDA traits. Additionally, autistic individuals may struggle with impression management during interviews, which can further impact employment outcomes. Transition service providers should focus on interventions that address self-determination, impression management, and strategies for effective job interviews.

• Assessment Tools: It is useful for providers to have reliable tools to identify PDA traits. For example, the Extreme Demand Avoidance Questionnaire—Adult version (EDA-QA) is a self-report measure that can be used in initial assessments.

• Intervention: A need for effective intervention and support strategies. Interventions that support trust and safety are highly individualized and flexible. These interventions should also include assessments and interventions to target underlying anxiety.

Looking Ahead

Current research highlights the need for increased awareness and understanding of demand avoidance. It is important to recognize that:

• Behaviors are not random; they are often an attempt to cope with overwhelming situations.

• A focus on anxiety can significantly help.

• Individualized, flexible support systems are the most effective.

• Low demand parenting, education, and work environments assist in gaining the trust and self-determination often lacking in individuals exhibiting PDA behaviors.

Current studies also highlight a need for more research into effective interventions for PDA, and on how PDA impacts life outcomes. This is particularly important during transitions, such as from high school to adulthood and employment. 

What are your experiences with demand avoidance? Share your thoughts in the comments below!

My next blog post will highlight a scale that measures PDA traits in children aged 5 to 17 years old. I will also talk about a scale that measures PDA traits in adults.

References

Egan, V., Bull, E., & Trundle, G. (2020). Individual differences, ADHD, adult pathological demand avoidance, and delinquency. Research in developmental disabilities, 105, 103733. https://doi.org/10.1016/j.ridd.2020.103733

Kenny, N., & Doyle, A. (2024). A phenomenological exploration of the lived experience of adults experiencing pathological demand avoidance. Neurodiversity, 2. https://doi.org/10.1177/27546330241277075

O’Nions, E., Viding, E., Greven, C. U., Ronald, A., & Happé, F. (2014). Pathological demand avoidance: Exploring the behavioral profile. Autism, 18(5), 538-544. https://doi.org/10.1177/1362361313481861

Scott, M., Milbourn, B., Falkmer, M., Black, M., Bӧlte, S., Halladay, A., Lerner, M., Taylor, J.L., & Girdler, S. (2019). Factors impacting employment for people with autism spectrum disorder: A scoping review. Autism, 23(4), 869-901. https://doi.org/10.1177/136236131878778

White, R., Livingston L., Taylor, E., Close, S., Shah, P, & Callan, M. (2023). Understanding the contributions of trait autism and anxiety to extreme demand avoidance in the adult general population. Journal of Autism and Developmental Disorders, 53(7), 2680–2688. https://doi.org/10.1007/s10803-022-05469-3