What Is Pathological Demand Avoidance (PDA)?
Clinicians at our clinic and our colleagues in the fields of child and adolescent psychiatry and psychology have noted an increased frequency of requests for assessment and diagnosis of Pathological Demand Avoidance (PDA).
Pathological Demand Avoidance (PDA) is a controversial subtype of Autism Spectrum Disorder (ASD) that is characterized by an extreme avoidance of everyday demands and a need for control. People with PDA are often misdiagnosed with other conditions such as Oppositional Defiant Disorder or Attention-Deficit/Hyperactivity-Impulsivity Disorder, but the hallmark of PDA is the intense avoidance of demands and need for control.
Pathological Demand Avoidance (PDA) as a conceptual subtype of Autism Spectrum Disorder (ASD) has a relatively recent history. The first description of PDA as a distinct condition can be traced back to the 1980s, when Dr. Elizabeth Newson, a pediatrician and researcher in the UK, first identified a group of individuals with autism who displayed an intense avoidance of everyday demands and a need for control. This eventually led to Dr. Newson coining the term Pathological Demand Avoidance (PDA). (Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Arch Dis Child. 2003 Jul;88(7):595-600.)
Dr. Newson's work paved the way for further research into PDA, and over the years, the condition has become more widely recognized as a distinct subtype of ASD. In recent years, there has been an increased focus on PDA, with growing recognition of the importance of early identification and intervention to support individuals with PDA to reach their maximal potential.
Despite this progress, PDA remains a relatively unknown and underdiagnosed condition, and there is ongoing work to raise awareness of PDA and improve understanding of the condition among healthcare professionals, educators and the general public.
PDA can present in many different ways and individuals may experience varying levels of difficulty with completing tasks, following routines and dealing with change. Some people with PDA may display challenging behavior, including repetitive routines, tantrums and avoidance techniques, as a way of coping with anxiety caused by demands and the perceived loss of control.
It is important to note that PDA is not just about avoiding demands. People with PDA can have a wide range of strengths and abilities and may have good communication skills and strong relationships. However, the intense anxiety and need for control can have a profound impact on their daily lives and may lead to difficulties in education, employment and social relationships.
It is also important to provide the perspective of recent reviews of the literature in which the authors of one review have opined that the evidence does not support the validity of Pathological Demand Avoidance (PDA) as an independent syndrome. However, this term highlights a number of clinical difficulties faced by many children with autism spectrum disorders. These difficulties may be understood by the range of sensitivities that Autism Spectrum Disorder (ASD) is associated with (social, communication, sensory, and cognitive). (Pathological Demand Avoidance: symptoms but not a syndrome. Lancet Child Adolesc Health. 2018 Jun;2(6):455-464.)
In a recent systematic review, the authors identified that the concept of pathological demand avoidance has been criticized for neglecting the potential role of anxiety as a possible underlying or contributing cause. After their comprehensive search, 13 relevant studies were identified that had based the identification of Pathological Demand Avoidance (PDA), directly or indirectly, on descriptions from the original study by Newson and colleagues. The reviewers found that there was a general failure to take account of alternative explanations for the study behaviours. Most studies relied only on parental reports for data while none explored the views of individuals with Pathological Demand Avoidance (PDA) themselves. The problems with definition and measurement in these studies limited any conclusions regarding the defining/diagnostic features of Pathological Demand Avoidance (PDA). (Pathological demand avoidance in children and adolescents: A systematic review. Autism. 2021 Nov;25(8):2162-2176.)
Effective treatment for the clinical features associated with PDA often involves a collaborative approach that addresses the individual's anxiety and provides support in navigating daily demands. This may include therapy, such as Cognitive Behavioural Therapy (CBT) and Exposure and Response Prevention (ERP), medication, and changes to the individual's environment. It is important to work with the person with clinical features associated with PDA, their family and carers, to create a supportive and understanding environment that takes into account their individual needs and strengths.
In educational settings, accommodations such as visual schedules and clear routines can be helpful in reducing anxiety and supporting success. It is also important to work with teachers and support staff to provide a positive and inclusive learning environment that takes into consideration the individual's strengths and challenges.
In employment, accommodations such as flexible working hours and a supportive work environment can be helpful in reducing anxiety and supporting success. It is important to work with the employer to find a suitable solution that considers the individual's needs and strengths.
In social relationships, it is important to provide support and understanding to individuals with clinical features associated with PDA. This may involve working with family, friends and carers to develop coping strategies and provide a supportive environment. It may also involve working with the individual with clinical features associated with PDA to develop social skills and build positive relationships.
Early identification and intervention are crucial for individuals with clinical features associated with PDA to reach their full potential. With the right support, people with clinical features associated with PDA can lead fulfilling and meaningful lives, develop strong relationships and achieve their goals and aspirations.
There are no specific tests to diagnose Pathological Demand Avoidance (PDA). The process of identifying clinical features associated with Pathological Demand Avoidance (PDA) typically involves a comprehensive assessment by a multidisciplinary team of healthcare professionals. The following are the steps involved in the diagnostic process:
Clinical Assessment: The first step is to conduct an initial assessment to determine if there are any symptoms and behaviors consistent with PDA. This may involve speaking to the individual and their family or carers about their experiences and observing their behavior.
Developmental Assessment: The next step is to gather a developmental history, which includes information about the individual's early years, language development, and social and emotional developmen.
.Observations / Assessments: The healthcare professional may also observe the individual in different environments, such as at in clinic, home, school or work, to gain a more complete understanding of their behavior and needs. This may also involve the use of standardized assessments and questionnaires. The observer-rated Extreme Demand Avoidance Questionnaire (EDA-Q) for children has been adapted as an adult self-report (EDA-QA). (The Measurement of Adult Pathological Demand Avoidance Traits. J Autism Dev Disord. 2019 Feb;49(2):481-494)
Multidisciplinary Team Assessment: The healthcare professional will usually consult with a multidisciplinary team of professionals, such as a psychiatrist, pediatrician, psychologist, and speech and language therapist, to gather a comprehensive picture of the individual's symptoms and needs.
Diagnosis: The final step is to make a diagnosis, which may be done through a combination of information from the initial assessment, developmental history, observations, and assessments.
It is important to note that PDA is not a recognized diagnostic category in the DSM-5-TR or ICD-10 classification, so it may not be immediately recognized by some healthcare professionals. However, a growing body of research and awareness about PDA is increasing recognition of the condition and the importance of early identification and intervention.
It is recommended to seek the help of a specialist in autism or related conditions who has experience in evaluating the clinical features associated with PDA, as the process can be complex and requires a thorough understanding of the condition and its specific symptoms and behaviors.
