Pathological demand avoidance

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Pathological demand avoidance
Other namesExtreme demand avoidance, demand avoidance, demand avoidance phenomenon, rational demand avoidance
Specialty Psychiatry
Symptoms Task avoidance, anxiety, need to control, masking, emotional lability, intolerance of uncertainty

Pathological demand avoidance (PDA), or extreme demand avoidance (EDA), is a behavioral profile characterized by an intense resistance to complying with requests or expectations and extreme efforts to avoid social demands. [1] Any expectation, even routine activities, such as brushing teeth, or highly desired activities, such as getting ready to leave home to visit a playground, can trigger avoidant behavior. If the demand cannot be avoided, a panic attack or a meltdown may ensue. [2]

Contents

Signs and symptoms

The primary sign is an atypical resistance to normal, everyday social demands. For the purposes of PDA, a demand may be presented within a social interaction, or it may involve another direct or implied expectation to cooperate. [3] It encompasses things that are interpreted as demands, such as being told to do homework, as well as societal expectations or requests (e.g., someone silently offering to shake hands). [3] Individuals with PDA display a resistance to everyday demands in a manner that is obsessive and dramatically beyond typical behavior. [4] The resistance to demands may also apply to demands that they make on themselves, such as preparing for a self-chosen favorite activity, and even to internal demands such as hunger or the need to use the restroom. [3] [5]

When people with PDA perceive a demand, they often use socially strategic tactics to avoid it. [5] For example, they may try to ignore the demand or distract the person issuing the demand by changing the subject, offering imaginative excuses, or renegotiating agreements on when the demand will be fulfilled. [5] [6] If the demand persists, a PDAer may escalate to intentionally shocking behavior, such as [in children] deliberately kicking someone to get out of doing something; shame or remorse for such inappropriate or infantile behavior is often not communicated. [7] [8] [6]

PDA is a spectrum, meaning its symptoms present differently depending on the individual. For example, PDA can be identified as internalized or externalized. Someone with internalized PDA may become withdrawn when they are triggered, rely on less obvious social strategies to avoid demands, and even comply in a perfectionistic manner in an attempt to neutralize the threat of the demand. [9] Internalized PDA reactions are no less intense than externalized reactions; they are simply more hidden from public view. Furthermore, those with internalized PDA are more likely to experience avoidance behaviors when their trigger came from an internal decision. [10] Externalized PDA includes an individual being expressive with their reactions when they have been exposed to a trigger, possibly resulting in meltdowns, panic attacks, controlling behavior, aggression, and anxiety. [11] [12]

The term was proposed in 1980 by British child psychologist Elizabeth Newson. [13] [14] PDA is observed in adults as well. [15]

In adults

The limited representation of adults in the literature makes it difficult to determine how demand avoidance behaviors present in adulthood. [16] One of the reasons for this is the absence of a reliable tool for systematically studying these traits in adults. [17] Furthermore, studies have mainly focused on PDA traits in individuals formally diagnosed with ASD, while less research has explored those with milder autistic traits, who share behavioral and genetic similarities with diagnosed autistic individuals. [17] It is not yet clear to what extent the symptoms decrease as children with PDA reach adulthood. [17]

Lacking a solid scientific foundation, adults with PDA or their friends and relatives have created support websites. [18] [19] [20]

Identification

PDA has never been included in the Diagnostic and Statistical Manual of Mental Disorders (DSM) or the International Classification of Diseases (ICD), [4] and therefore has no diagnostic criteria. To be recognized, a sufficient amount of consensus and clinical history needs to be present, and as a newly proposed condition, PDA had not met the standard of evidence required at the time of recent revisions, however, patients that exhibited PDA behaviors were later diagnosed with autism using the DSM. [21]

Extreme Demand Avoidance Questionnaire

The 26-item Extreme Demand Avoidance Questionnaire (EDA-Q) was designed for research, but has been used as an aid to identification in children. [22] In 2021, this was reduced to an 8-item questionnaire (EDA-8). [23] The shorter version, which has less bias in terms of gender and academic skills, retains questions from the original version such as whether the child will use "outrageous or shocking behavior" to avoid a demand, whether the child's mood changes rapidly, and whether the child is unaware or indifferent to social hierarchies and the role of authority figures. The original questionnaire has been lightly adapted to be more appropriate for adults (EDA-QA). [24]

However, the EDA-Q has been criticized for its methodological limitations, particularly its reliance on circular reasoning. PDA research often lacks methodological rigor, with many studies using tools like the EDA-Q, which was developed based on criteria derived from Newson et al.’s (2003) original descriptions rather than independent validation. [25]

Associated conditions

PDA is typically associated with autism, though a correlation with attention deficit hyperactivity disorder (ADHD) has also been found. Emotional lability and hostility are other traits possibly associated with PDA. [26]

One study found that while approximately 20% of autistic individuals exhibited some traits associated with PDA in childhood, only about 4% fully met the criteria for PDA. These findings raise questions regarding whether PDA constitutes a lifelong condition or is primarily a childhood-specific presentation. The study suggests that while PDA may represent a minority subset of ASD diagnoses in childhood, the diagnostic criteria for PDA are unlikely to be consistently met in later adolescence and early adulthood. [27]

Commonly associated features of PDA include:

Causes

The underlying cause of demand avoidance is unknown. Many individuals identified with PDA also have a co-occurring anxiety disorder, such as generalized anxiety disorder. Research has explored intolerance of uncertainty as a potential contributing factor to PDA, as individuals with PDA may exhibit extreme avoidance behaviors in response to unpredictable situations or demands. [29] About 40% of autistic people suffer from an anxiety disorder. [30]

History

Elizabeth Newson investigated PDA as a separate disorder from autism in the 1970s at the Child Development Research Clinic of Nottingham. She proposed it as a pervasive developmental disorder (PDD), but emphasized that it is distinct from autism spectrum disorder, noting that "PDA is a pervasive developmental disorder but not an autistic spectrum disorder; to describe it as such would be like describing every person in a family by the name of one of its members." This perspective reinforces that PDA was not intended to be synonymous with autism from its inception. [31]

When Newson was made professor of developmental psychology at the University of Nottingham in 1994, she dedicated her inaugural lecture to talking about pathological demand avoidance syndrome. [32]

In 1997, the PDA Society was established in the UK by parents of children with a PDA profile. It became a registered charity in January 2016. [33]

In July 2003, Newson published in Archives of Disease in Childhood for PDA to be recognized as a separate syndrome within the pervasive developmental disorders. [34]

In 2020, an incorporated association was established in Australia. Pathological Demand Avoidance Australia, Inc. became a registered charity early 2021. [35]

In March 2020, the first American PDA conference was held. Soon after, PDA North America was formed. It became a registered charity in 2022. [36]

Naming controversy

Pathological demand avoidance has been criticized as a name for various reasons, including the negative connotations some confronted with the word pathological might have. [37] For example, autistic social psychologists Damian Milton and Devon Price have suggested the behavior should not be considered pathological. They view PDA as an example of individual autonomy or self-advocacy. [38] Alternative names like rational demand avoidance (RDA) [39] or pervasive drive for autonomy [40] [41] have been proposed and used.

References

  1. Newson, Elizabeth (2003). "Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders". Archives of Disease in Childhood. 88 (7): 595–600. doi:10.1136/adc.88.7.595. PMC   1763174 . PMID   12818806 . Retrieved 29 January 2025.
  2. Truman, Clare (21 July 2021). "PDA – What do we know so far?". The Teacher's Introduction to Pathological Demand Avoidance: Essential Strategies for the Classroom. Jessica Kingsley Publishers. pp. 15–22. ISBN   978-1-78775-488-1.
  3. 1 2 3 Truman, Clare (21 July 2021). "PDA – What do we know so far?". The Teacher's Introduction to Pathological Demand Avoidance: Essential Strategies for the Classroom. Jessica Kingsley Publishers. pp. 15–22. ISBN   978-1-78775-488-1.
  4. 1 2 O'Nions E, Gould J, Christie P, Gillberg C, Viding E, Happé F (April 2016). "Identifying features of 'pathological demand avoidance' using the Diagnostic Interview for Social and Communication Disorders (DISCO)". European Child & Adolescent Psychiatry. 25 (4): 407–419. doi:10.1007/s00787-015-0740-2. PMC   4820467 . PMID   26224583.
  5. 1 2 3 Fidler, Ruth; Gould, Diane (2024). Navigating PDA in America: A Framework to Support Anxious, Demand-Avoidant Autistic Children, Teens and Young Adults. London: Jessica Kingsley Publishers. ISBN   9781839972744.
  6. 1 2 O'Nions E, Gould J, Christie P, Gillberg C, Viding E, Happé F (April 2016). "Identifying features of 'pathological demand avoidance' using the Diagnostic Interview for Social and Communication Disorders (DISCO)". European Child & Adolescent Psychiatry. 25 (4): 407–419. doi:10.1007/s00787-015-0740-2. PMC   4820467 . PMID   26224583.
  7. Truman, Clare (21 July 2021). "PDA – What do we know so far?". The Teacher's Introduction to Pathological Demand Avoidance: Essential Strategies for the Classroom. Jessica Kingsley Publishers. pp. 15–22. ISBN   978-1-78775-488-1.
  8. Egan, Vincent; Linenberg, Omer; O’Nions, Elizabeth (February 2019). "The Measurement of Adult Pathological Demand Avoidance Traits". Journal of Autism and Developmental Disorders. 49 (2): 481–494. doi:10.1007/s10803-018-3722-7. ISSN   0162-3257. PMC   6373319 . PMID   30140985.
  9. appointments@sunfieldcenter.com (27 May 2023). "Identifying and Navigating PDA". Sunfield Center. Retrieved 1 February 2024.
  10. "Pathological Demand Avoidance and ADHD". Psych Central. 9 December 2022. Retrieved 1 February 2024.
  11. PDAadmin. "What is demand avoidance?". PDA Society. Retrieved 1 February 2024.
  12. "Pathological Demand Avoidance in Kids". Child Mind Institute. Retrieved 1 February 2024.
  13. Newson E, Le Maréchal K, David C (July 2003). "Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders". Archives of Disease in Childhood. 88 (7). Royal College of Paediatrics and Child Health: 595–600. doi:10.1136/adc.88.7.595. PMC   1763174 . PMID   12818906.
  14. Feinstein A (2010). A History of Autism: Conversations with the Pioneers. Wiley-Blackwell. p. 181. ISBN   978-1-4051-8654-4.
  15. "Pathological Demand Avoidance: an adults perspective". Archived from the original on 19 January 2021.
  16. Johnson, Matt; Saunderson, Helen (11 July 2023). "Examining the relationship between anxiety and pathological demand avoidance in adults: a mixed methods approach". Frontiers in Education. 8. Frontiers Media SA. doi: 10.3389/feduc.2023.1179015 . ISSN   2504-284X.
  17. 1 2 3 Egan, Vincent; Linenberg, Omer; O’Nions, Elizabeth (2019). "The Measurement of Adult Pathological Demand Avoidance Traits" (PDF). Journal of Autism and Developmental Disorders. 49 (2): 481–494. doi: 10.1007/s10803-018-3722-7 . ISSN   0162-3257. PMC   6373319 . PMID   30140985 . Retrieved 5 March 2025.
  18. "Life with PDA". PDA Society. 23 September 2024. Retrieved 6 March 2025.
  19. "Understanding Pathological Demand Avoidance in Adults". NeuroSpark Health. Retrieved 6 March 2025.
  20. "living with pathological demand avoidance: strategies for dealing with PDA". Rachelle Bloksberg. 19 July 2024. Retrieved 6 March 2025.
  21. Woods, Richard (2020), "Pathological Demand Avoidance (PDA)", Encyclopedia of Autism Spectrum Disorders, New York, NY: Springer New York, pp. 1–3, doi:10.1007/978-1-4614-6435-8_102293-2, ISBN   978-1-4614-6435-8 , retrieved 23 February 2024
  22. "A Parent's Guide to Understanding Pathological Demand Avoidance (PDA) - Part of the Autism Spectrum" (PDF). Molis. Denmark. Retrieved 27 February 2025.
  23. O’Nions, Elizabeth; Happé, Francesca; Viding, Essi; Noens, Ilse (September 2021). "Extreme Demand Avoidance in Children with Autism Spectrum Disorder: Refinement of a Caregiver-Report Measure". Advances in Neurodevelopmental Disorders. 5 (3): 269–281. doi: 10.1007/s41252-021-00203-z . ISSN   2366-7532. S2CID   236387901.
  24. Egan, Vincent; Linenberg, Omer; O’Nions, Elizabeth (February 2019). "The Measurement of Adult Pathological Demand Avoidance Traits". Journal of Autism and Developmental Disorders. 49 (2): 481–494. doi:10.1007/s10803-018-3722-7. ISSN   0162-3257. PMC   6373319 . PMID   30140985.
  25. Haire, Lauren; Symonds, Jennifer; Senior, Joyce; D’Urso, Giulio (2024). "Methods of Studying Pathological Demand Avoidance in Children and Adolescents: A Scoping Review". Frontiers in Education. 9. Retrieved 29 January 2025.
  26. Egan, Vincent; Bull, Elinor; Trundle, Grace (October 2020). "Individual differences, ADHD, adult pathological demand avoidance, and delinquency". Research in Developmental Disabilities. doi:10.1016/j.ridd.2020.103734. hdl: 2437/302438 .
  27. Gillberg, Christopher; Gillberg, I. Carina; Thompson, Lucy (2015). "Extreme ("pathological") demand avoidance in autism: a general population study in the Faroe Islands". European Child & Adolescent Psychiatry. 24 (8): 979–984. doi:10.1007/s00787-014-0647-3 . Retrieved 29 January 2025.
  28. 1 2 3 4 O'Nions E, Gould J, Christie P, Gillberg C, Viding E, Happé F (April 2016). "Identifying features of 'pathological demand avoidance' using the Diagnostic Interview for Social and Communication Disorders (DISCO)". European Child & Adolescent Psychiatry. 25 (4): 407–419. doi:10.1007/s00787-015-0740-2. PMC   4820467 . PMID   26224583.
  29. Stuart L, Grahame V, Honey E, Freeston M (May 2020). "Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents". Child and Adolescent Mental Health. 25 (2): 59–67. doi:10.1111/camh.12336. PMID   32307839. S2CID   182321645.
  30. Zaboski BA, Storch EA (February 2018). "Comorbid autism spectrum disorder and anxiety disorders: a brief review". Future Neurology. 13 (1): 31–37. doi:10.2217/fnl-2017-0030. PMC   5772195 . PMID   29379397.
  31. Newson, E (1 July 2003). "Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders : Supporting Information" (PDF). Archives of Disease in Childhood. 88 (7): 595–600. doi:10.1136/adc.88.7.595. ISSN   0003-9888. PMC   1763174 . PMID   12818906 . Retrieved 13 February 2025.
  32. Christie P (20 February 2014). "Elizabeth Newson obituary". The Guardian . Retrieved 13 December 2020.
  33. "About the PDA Society". PDA Society. Retrieved 13 December 2020.
  34. Newson E, Le Maréchal K, David C (July 2003). "Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders". Archives of Disease in Childhood. 88 (7). Royal College of Paediatrics and Child Health: 595–600. doi:10.1136/adc.88.7.595. PMC   1763174 . PMID   12818906.
  35. "PDA Australia". PDA Australia. Retrieved 17 June 2021.
  36. "PDA North America". PDA North America.
  37. "Autistic PDA: Persistent Drive For Autonomy, by Jillian Enright / neurodiversified". 22 April 2023.
  38. Hess P (11 August 2022). "Pathological demand avoidance in autism, explained". Spectrum. doi:10.53053/YKGQ6660. S2CID   251477348 . Retrieved 2 March 2023.
  39. Woods, Richard (2022). "Rational (Pathological) Demand Avoidance: As a mental disorder and an evolving social construct". In Milton, Damian; Ryan, Sara (eds.). The Routledge International Handbook of Critical Autism Studies. London: Routledge. doi:10.4324/9781003056577-7. ISBN   9781003056577.
  40. Butler, Emily (27 October 2021). "Reframing PDA: The Power of an Autistic Perspective". Reframing Autism.
  41. "PDA Day-to-Day: Parenting Pathological Demand Avoidance/ Pervasive Demand for Autonomy / Neurodiverging". 19 January 2023.

Further reading