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Pathological demand avoidance

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Pathological demand avoidance (PDA) or extreme demand avoidance (EDA) is a proposed disorder, and proposed sub-type of autism spectrum disorder, defined by characteristics such as a demand avoidance—which is a greater-than-typical refusal to comply with requests or expectations—and extreme efforts to avoid social demands.[1][2] 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.[3] If the demand cannot be avoided, a panic attack or a meltdown may ensue.[4]

Pathological demand avoidance
Other namesPDA, Extreme Demand Avoidance, Demand Avoidance
SpecialtyPsychiatry
SymptomsIrrational task avoidance, extreme anxiety, need to control, masking, volatile emotions
Onsetearly childhood
CausesAnxiety, autism
TreatmentPANDA acronym approach

History

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Elizabeth Newson investigated PDA as a separate disorder from autism in the 1970s at the Child Development Research Clinic of Nottingham. Most of the children referred to this clinic were seen as atypical. Many children exhibited behaviors that reminded their referrers of autism, but their referrers were unsure if it could be diagnosed. Because of some children's abilities such as imaginative ability and role play, many parents and doctors were skeptical when their child was diagnosed with atypical autism.[5]

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.[6]

In 1997, the PDA Society was established in the UK by parents of children with a PDA profile of autism. It became a registered charity in January 2016.[7]

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.[8]

In 2020, an incorporated association was established in Australia. Pathological Demand Avoidance Australia, Inc. became a registered charity early 2021.[9]

In March 2020, the first American PDA conference was held. Soon after, PDA North America was formed. It became a registered charity in 2022.[10]

Signs

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Not all demands involve being ordered to do a task. In PDA, silently offering something can be perceived as a demand.

The primary sign is an atypical resistance to normal, everyday social demands. For the purposes of PDA, a demand is social interaction or similar opportunity to cooperate, very broadly understood.[11] It encompasses things that seem like demands, such as being told to do homework now, but it also includes everything from someone silently offering to shake hands to knowing that catching the bus requires leaving home in time to walk to the bus stop.[11] All children are uncooperative from time to time, and this may be amplified during some developmental phases (e.g., the so-called "terrible twos"). However, children with PDA display a resistance to everyday demands that goes dramatically beyond typical behavior, until it interferes with their everyday lives, and their resistance is obsessive and extreme.[12] The resistance to demands also applies to demands that they make on themselves, such as preparing for a self-chosen favorite activity.[11]

When people with PDA perceive demands, they may use a variety of methods to avoid it. For example, they may try to ignore it or distract the person with a different subject.[13] If the demand persists, they may strategically 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.[14][15][13]

Additional associated features including:

  • an appearance of social skills that are superficially acceptable but which have odd features, such as [in children] a belief that the normal rules apply only to other people, or that they have the same authority as adults or people in positions of authority;[16]
  • emotional lability, such as being affectionate one moment and angry the next, and impulsive and controlling behaviors;[16]
  • being comfortable with role-playing and pretending to be other characters.[16] This may be used when trying to avoid a demand; and
  • "soft" signs of neurological divergence, such as language delay, obsessive behavior, delayed milestones, or clumsiness.[16]

Identifying PDA

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A PDA profile is a spectrum of different features that a person may experience. Depending on a certain profile, the PDA can be considered internalized or externalized. Internalized PDA includes an individual being more quiet and reserved with their reactions when they are triggered.[17] Internalized PDA reactions are not less intense; rather, their reactions are hidden from public view. Furthermore, these individuals can experience more avoidance behaviors when their trigger came from an internal decision.[18] Externalized PDA includes an individual being expressive with their reactions when they have been exposed to a trigger. This could result in noticeable physical and mental differences such as meltdowns, panic attacks, being controlling, aggressive, and anxiety.[19][20]

Although PDA has its own traits that are separate from autism, people with PDA generally meet the diagnostic criteria by having significant difficulties in social interaction and communication.[2] Alternatively, they may instead be diagnosed with Oppositional defiant disorder (ODD).[2] Those who propose that PDA should be a separate diagnosis from classic autism spectrum disorders observed that, compared to children with classic autism, those with PDA:

  • are more sociable
  • have better social skills and social understanding
  • use apparently socially manipulative and shocking behavior[21][22]
  • are more interested in people than objects
  • are more comfortable with pretend play, and
  • are more imaginative

The term was proposed in 1980 by the UK child psychologist Elizabeth Ann Newson.[22][23] PDA is observed in adults as well.[24]

Diagnosis

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PDA is not included in the Diagnostic and Statistical Manual of Mental Disorders (DSM) or the International Classification of Diseases (ICD). 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.[25]

As of 2014 there are no officially recognized diagnostic criteria.[26] Observations in children with PDA that were identified as common features[21] that potential possible diagnostic criteria could be based on include:

The 26-item Extreme Demand Avoidance Questionnaire (EDA-Q) was designed for research, but has been used as an aid to diagnosis in school-age children. In 2021, this was reduced to an 8-item questionnaire (EDA-8).[28] 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 instantly, and whether the child is unaware or indifferent to social hierarchies and the role of authority figures.[28] The original questionnaire has been lightly adapted to be more appropriate for adults (EDA-QA).[29]

Many of the studies published on PDA have methodological limitations, which restricts conclusions that can be drawn about patterns of behaviors characteristic of PDA. It is unknown how much demand-avoidant behaviors vary between children and how much they change as they grow up.[30]

Causes of demand avoidance

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The underlying cause of demand avoidance in autistic children is said to be a high level of anxiety, usually from expectations of demands being placed on children, which can lead to a feeling of not being in control of a situation. Consequently, an additional diagnosis of generalized anxiety disorder or another anxiety disorder may be made instead of PDA.[31] About 40% of autistic people suffer from an anxiety disorder.[32]

Children with PDA feel threatened when they are not in control of their environment and their actions, which triggers the fight, flight or freeze response.[33]

Recognition

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In 2011, the National Institute for Health and Care Excellence (NICE) said that PDA has been proposed as part of the autism spectrum but did not include further discussion within the guideline.[2] NICE guidance also expects an ‘ASD’ diagnosis be accompanied by a diagnostic assessment, providing a profile of key strengths and difficulties. Demand avoidance is listed as a ‘sign or symptom of ASD’ (Appendix 3).[2]

Christopher Gillberg wrote in 2014 that "Experienced clinicians throughout child psychiatry, child neurology and pediatrics testify to its existence and the very major problems encountered when it comes to intervention and treatment."[34]

Naming controversy

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Pathological demand avoidance has been criticized as a name for various reasons, including the negative connotations some confronted with the word pathological might have.[35] For example, 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.[36] Alternative names like Rational Demand Avoidance (RDA)[37] or Pervasive Drive for Autonomy[38][39] have been proposed and used.

References

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  1. ^ "Demand avoidance". www.autism.org.uk. Retrieved 12 March 2024.
  2. ^ a b c d e National Collaborating Centre for Women’s and Children's Health (September 2011). Autism: recognition, referral and diagnosis of children and young people on the autism spectrum (PDF). pp. 235, 286. PMID 22624178.
  3. ^ Types of avoidant behavior
  4. ^ 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.
  5. ^ Newson, E (1 July 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. ISSN 0003-9888. PMC 1763174. PMID 12818906.
  6. ^ Christie P (20 February 2014). "Elizabeth Newson obituary". The Guardian. Retrieved 13 December 2020.
  7. ^ "About the PDA Society". PDA Society. Retrieved 13 December 2020.
  8. ^ 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.
  9. ^ "PDA Australia". PDA Australia. Retrieved 17 June 2021.
  10. ^ "PDA North America". PDA North America.
  11. ^ a b c 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.
  12. ^ 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.
  13. ^ a b 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.
  14. ^ 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.
  15. ^ 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.
  16. ^ a b c d 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.
  17. ^ appointments@sunfieldcenter.com (27 May 2023). "Identifying and Navigating PDA". Sunfield Center. Retrieved 1 February 2024.
  18. ^ "Pathological Demand Avoidance and ADHD". Psych Central. 9 December 2022. Retrieved 1 February 2024.
  19. ^ PDAadmin. "What is demand avoidance?". PDA Society. Retrieved 1 February 2024.
  20. ^ "Pathological Demand Avoidance in Kids". Child Mind Institute. Retrieved 1 February 2024.
  21. ^ a b c 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.
  22. ^ a b 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.
  23. ^ Feinstein A (2010). A History of Autism: Conversations with the Pioneers. Wiley-Blackwell. p. 181. ISBN 978-1-4051-8654-4.
  24. ^ "Pathological Demand Avoidance: an adults perspective".[dead link]
  25. ^ 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
  26. ^ Department of the Official Report (Hansard), House of Commons Westminster. "House of Commons Hansard Written Answers for 28 Apr 2014 (pt 0002)".
  27. ^ "Part of the Autism Spectrum". PDA Society.
  28. ^ a b 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.
  29. ^ 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.
  30. ^ Kildahl AN, Helverschou SB, Rysstad AL, Wigaard E, Hellerud JM, Ludvigsen LB, Howlin P (November 2021). "Pathological demand avoidance in children and adolescents: A systematic review". Autism. 25 (8): 2162–2176. doi:10.1177/13623613211034382. hdl:10072/406678. PMID 34320869. S2CID 236498146.
  31. ^ 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.
  32. ^ 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.
  33. ^ Dundon R (21 November 2019). The Parents' Guide to Managing Anxiety in Children with Autism. Jessica Kingsley Publishers. p. 114. ISBN 9781785926570.
  34. ^ Gillberg C (July 2014). "Commentary: PDA--public display of affection or pathological demand avoidance?--reflections on O'Nions et al. (2014)". Journal of Child Psychology and Psychiatry, and Allied Disciplines. 55 (7): 769–770. doi:10.1111/jcpp.12275. PMID 24890260.
  35. ^ "Autistic PDA: Persistent Drive For Autonomy, by Jillian Enright / neurodiversified". 22 April 2023.
  36. ^ Hess P (11 August 2022). "Pathological demand avoidance in autism, explained". Spectrum. doi:10.53053/YKGQ6660. S2CID 251477348. Retrieved 2 March 2023.
  37. ^ 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.
  38. ^ "Reframing PDA: The power of an Autistic perspective - Reframing Autism". 27 October 2021.
  39. ^ "PDA Day-to-Day: Parenting Pathological Demand Avoidance/ Pervasive Demand for Autonomy / Neurodiverging". 19 January 2023.

Further reading

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