Understanding Pathological Demand Avoidance in Adults

Pathological Demand Avoidance (PDA) is a term gaining recognition in the neurodivergent community, particularly within the broader spectrum of autism. PDA was first discussed in the 1980s by the psychologist Professor Elizabeth Newson who called for it to be recognized as a separate but related condition within the broader category of Pervasive Developmental Disorders. **Because there is still academic/clinical debate about the terminology and classification of PDA, recognition of the pathological demand avoidance profile is limited and inconsistent.

What does PDA mean?

Pathological Demand Avoidance is characterized by an extreme anxiety-driven resistance to the ordinary demands of life. In adults, this may manifest as an overwhelming need to control their environment and avoid tasks that evoke stress. It's important to recognize that PDA exists on a spectrum, and individuals may display varying degrees of demand avoidance.

What does PDA look like in adults?

Adults with PDA might struggle with tasks that involve change, uncertainty, or external expectations. This frequently leads to difficulties in employment, relationships, and day-to-day functioning. Key features of a PDA profile include:

a. Resists and avoids the ordinary demands of life

b. Uses social strategies as part of the avoidance

c. Appears sociable on the surface, but lacking depth in understanding

d. Experiences excessive mood swings and impulsivity

e. ‘Obsessive’ behavior, often focused on other people

f. Appears comfortable in role play and pretend, sometimes to an extreme extent (this feature is not always present)

To date, there are no clinician-rated instruments for identifying a PDA profile. Instead providers assessing PDA frequently rely on measures developed for research purposes (i.e. EDA-QA, DISCO) and/or clinical judgment. (We actually developed our own pathological demand avoidance checklist!) It’s also important to note that current information about PDA in adults is largely limited to descriptions provided by those with lived experience who identify with a PDA profile. However, more empirical research is needed in this area. 

PDA profiles are most often identified during adult autism assessments, but some evaluators may not be familiar with PDA or comfortable including it as part of a larger assessment. Even if the evaluator identifies demand avoidance as a key feature, it might not be explicitly stated in the formal report. Also it’s important to note that terminologies used post-assessment can vary by region and by professional, some using 'Autism with a PDA profile', 'Autism with PDA traits', or ‘Pathological Demand Avoidance Syndrome’, while others might simply describe demand avoidance characteristics within the report accompanying an autism diagnosis. The important thing is that adequate clinical attention is given to demand avoidance as a crucial characteristic that can guide tailored strategies and interventions. 

Is PDA ‘real’?

As previously mentioned, there is disagreement and controversy about PDA as a subtype of autism, PDA diagnosis, and in general. One of the driving factors in the debate is related to the limited PDA research that is being performed primarily with autistic children and their caregivers’ report of their behavior. These biased studies rely on someone else’s interpretation of experience rather than the experience of the adult PDAer themself.

Neurodiversity-Affirming Lens

The disagreement about the validity of the PDA profile also relates to neurodiversity. The associated traits of PDA are widely acknowledged and accepted, but the underlying reason(s) why these traits develop is what sparks controversy. Is the PDA profile pathologizing (i.e. PATHOLOGICAL demand avoidance) and therefore not neurodiversity-affirming? Some have suggested PDA is another label assigned to autistic people that is not helpful and may lead to additional stigma. For this reason, Tomlin Wilding's interpretation and suggestion to change pathological demand avoidance to pervasive drive for autonomy strongly resonates with me.

What causes pathological demand avoidance?

There’s no cause of PDA. It’s simply a difference in cognitive style that is characterized by marked demand avoidance. But that is only one feature of the profile. If many or most of the other key features above are not present, demand avoidance is likely better attributed to other causes. Assessments should include not only consideration of whether the demand avoidance is ‘extreme’ but also more nuanced factors and consideration of other explanations, including autism without a PDA profile, anxiety, trauma, ADHD, learning difficulties, personality disorders, and/or other physical health or mental health conditions. 

Navigating Daily Challenges

Adults with PDA may face challenges in various aspects of life. Employment settings, for instance, may require tailored accommodations to ensure success. Flexible schedules, clear communication, and an understanding work environment can significantly contribute to an individual's well-being.

How to deal with pathological demand avoidance in adults

It may be helpful to initially focus on reducing situations that feel overwhelming. Fostering self-awareness and the development of personalized coping mechanisms can also help individuals navigate the demands of daily life more effectively. Other strategies include avoiding sensory overload and requesting appropriate accommodations (i.e. occupational, academic, travel, healthcare appointments, etc.). Support provided by others should be person-centered, acknowledging individual strengths and challenges. 

PDA and ADHD

Can you have PDA without autism? While PDA is most often associated with autism, the profile also frequently resonates with ADHDers. And a recent study found that PDA is better predicted by and may be more closely associated with ADHD than autism. The same study suggested PDA may be a distinct condition characterized by traits associated with ADHD, anxiety, and oppositional defiant disorder rather than an autism subtype. So if you’re interested in pursuing a PDA diagnosis, an AuDHD assessment (dual autism + ADHD evaluation) may be the best option.

NeuroSpark Health provides a nuanced neurodiversity-affirming approach to pathological demand avoidance in adults. 

By recognizing the uniqueness of each individual's experience and implementing tailored support strategies, we can contribute to a more inclusive and compassionate society that embraces the diversity of the human mind and our individual neurotypes. 

Further reading: If you’re interested in learning more about pathological demand avoidance in adults, check out our resource page here.