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Research Summary

Demand Avoidance: What It Is and Some Strategies for Moving Forward

David Nicholas, Wenn Lawson, Hilary Nelson, Fakhri Shafai
Demand avoidance involves the experience of having difficulty to do an action when requested or expected, and refers to responses made to avoid demands. This toolkit is intended to introduce demand avoidance, and offer some potential options related to how to respond

Photo by Karolina Grabowska on Pexels

 

Contents:

  1. Introduction
  2. Meet Charlie…
  3. What the Research Says…
  4. Differences in Terminology
  5. Demand Avoidant Characteristics
  6. Determining PDA
  7. Underlying Contributors
  8. Considering Sensory and Experiential Differences
  9. Supporting Individuals and Families
  10. What Not to Do?
  11. What Can Help?
  12. Resources for Self-Advocates, Parents and Supporters
  13. Further Information Related to PDA
  14. References

 

1.  Introduction:

Demand avoidanceinvolves the experience of being unable to do an action when requested/expected and refers to responsesmade to avoid demands.1 To a degree, performing some level of demand avoidance is normal for all.1 For instance, most of us have experienced making excuses when we want to put off an unpleasant chore. The difference in demand avoidance is that a person may actually want to do an activity, but as soon as it is expected, they will avoid it.

Knowledge about experiences of demand avoidance in autism is still limited, but information is emerging largely from the United Kingdom and Ireland, with a few articles published in Scandinavia. At this time, no North American academic study was found that is exploring demand avoidance.

Wenn Lawson PhD, AFBPsS, MAPs was interviewed in the development of this toolkit, with segments of the interview interspersed throughout the resource. Dr. Lawson is an Autistic Consultant, Researcher, and Adjunct Associate Professor at Curtin University in Western Australia. He brings a focus on this topic of demand avoidance, as well as related notions such as monotropism, object permanence, and interoception in Autistic people.

This toolkit is intended to support website users seeking to understand what may appear to be an individual’s lack of motivation or inability to start tasks. We hope to provide parents and teachers better understanding and some options related to how to approach demand avoidance. It may be that some haven’t yet considered that demand avoidance may be at the root of some of the challenges that are being encountered.

 

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2.  Meet Charlie…

Charlie is an Autistic eight-year-old child, and his parents see him as a sensitive child; often, something that seems minor to others can shift his mood quickly. His mom feels that his favourite word is ‘no.’ Charlie says no to many things. She reports spending much of her time trying to negotiate with Charlie to get him to do things. It doesn’t seem to matter whether it is something that Charlie likes or doesn’t like—if asked to do it, the response is ‘no’. Charlie has refused to eat his favorite food for dinner – despite saying he was hungry. When being told to do something, his mom says that Charlie sometimes pretends he can’t hear or tries to distract her by changing the topic or engaging in a debate about the request. If his mom pushes for compliance with the demand, Charlie becomes very upset. When he is upset, meltdowns are common.

Parenting ‘tricks’ that worked with Charlie’s older siblings, such as promising rewards for good behaviour or reinforcing boundaries, do not seem to work with Charlie. Sometimes, his mom reports that it is easier to give up or give in than to engage in protracted arguments with Charlie. His mom has noticed that she now plans many things in daily life around Charlie’s potential reactions.

Charlie’s demand avoidance is dominating the family dynamic, although his mom says one strategy has recently been helpful in gaining Charlie’s cooperation. This involves giving Charlie limited options to choose from; for example, his mom would offer him a choice of times to gather his laundry: “Do you want to do it now or after you’ve finished your puzzle?”.  In following up with her son’s support team, ‘demand avoidance’ has been mentioned as something to explore.

 

NOTE: This is just one of many expressions of demand avoidance. A child, for instance, may argue, change topics, cry, or yell. Others may elope or run, threaten, engage in self-harm, or lash out physically toward those making a demand.

 

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3.  What the Research Says…

There is little research indicating the proportion of people who experience demand avoidance. One study on the Autistic population in the Faroe Islands suggests that 1 in 5 Autistic individuals may present with demand avoidance behaviours to a degree that may impact everyday life.2 But a reviewer of this toolkit suggested that this is likely under-estimated. The available literature is primarily focused on children and adolescents,3 although there have been a few recent studies focused on adults.4-5 There is general thought that the severity of demand avoidant behaviours may lessen with age for some due to increased coping ability.4-6

Dr. Lawson reflects on demand avoidance over the lifespan:

 

 

Because research in this area is still limited, findings may be mixed, and there is a lack of depth of evidence and replication of studies. Any current research should be viewed with caution as future studies will continue to explore, test and potentially challenge our current understanding.  Despite the limitations, research helps us understand how demand avoidance is being discussed in relation to autism. Dr. Lawson discusses his thoughts on the demand avoidance literature in relation to autism:

 

 

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4.  Differences in Terminology

The term, ‘pathological demand avoidance’ syndrome (PDA) was originally coined in the 1980s by Elizabeth Newson. She described a set of ‘demand avoidant behaviours’ within children previously classified as having atypical autism or as an unspecified pervasive developmental disorder (PDD-NOS).7-8 The label and description of ‘pathological demand avoidance’ is controversial. ‘Pathological’ was chosen to indicate the degree of impact and long-lasting nature of PDA in the hope that it would ease the stigmatization of a child and/or their parents.7 But others find this term and its connotation negative and demeaning.

A common alternative term is ‘extreme demand avoidance’ (EDA). EDA moves us away from negative connotations related to the word ‘pathological’ though it still notes the perceived disproportionate nature of demand avoidant behaviours.9 The early terminology of PDA and of EDA has been critiqued for a perceived judgment of autism-related features, and a failure to understand what the experience of ‘demand avoidant behaviours’ is like for an individual.8,10 From this perspective, ‘demand avoidant behaviours’ should be understood as rational coping mechanisms,8 or as ‘rational demand avoidance.’9 Evolving from these critiques, and an acknowledgment of the lack of consensus on potential causes of demand avoidant behaviours, ‘demand avoidance phenomenon’ or DAP has been proposed as a neutral alternative to describe behaviours without suggesting what’s behind it or judgement.9 A toolkit reviewer proposed “pervasive demand avoidance” in recognizing the prevalence of the response, and the extent of impact on many situations and in many environments. Dr. Lawson describes his understanding and experience of demand avoidance, and his preferred terminology, specifically “Persistent Drive for Autonomy”, in the following clip.

 

 

Of the terms used, PDA and EDA currently are most commonly used in professional and academic spheres. For consistency, the acronym “PDA” will be used in the toolkit to refer to demand avoidant behaviours.

 

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5.  Demand Avoidant Characteristics

Our understanding of PDA characteristics has evolved over time. There is no formal recognition of PDA in diagnostic instruments. In the United Kingdom (UK), the National Institute for Health and Care Excellence (NICE) guidelines briefly mention demand avoidance in an appendix on autism diagnosis. While it has been said that some UK and Irish clinicians are diagnosing people with demand avoidance, 11-12 “there [is] no recognized diagnostic criteria.”5 Despite the lack of formal recognition, there has been research developing profiles or diagnostic tools of PDA characteristics. One challenge is there is no consensus on what is required for a PDA diagnosis,10 or whether a diagnosis should even be necessary to understand and support an individual’s specific support needs.12-13

 

Newson and colleagues7 originally defined eight defining characteristics for PDA, but these have shifted over time. Recognizing that each individual is unique, the original characteristics were not meant as a checklist. Rather, the expectation is that an individual with PDA “will show the complexity of the overall pattern, rather than just a couple characteristics.”7 Here are some of these identified characteristics of PDA:

 

  • Continually resists and avoids ordinary demands of life: In response to a sense of pressure from expectations, one may develop ways or language to avoid demands7 whereby the individual is using “a scripted and limited strategy for ensuring predictability and control.”14
  • Surface sociability, and the apparent lack of a sense of social identity, pride or shame: Individuals with PDA may seem to navigate social situations well at times, although the depth of their social understanding may be limited. Behaviours may lack a recognition of boundaries and/or hierarchies.7 On the other hand, socially-engaged strategies may lead to avoidant behaviors/responses.
  • Changing mood and impulsivity, led by a need to control: Quick and dramatic mood changes or conflicting behaviours can occur at the same time for (a) no obvious reason, (b) following an impulse, (c) in response to perceived pressure, or (d) in response to suspected exertion of control.7
  • Comfort with role play and pretending: Behaviour can be used as a coping strategy where fantasy may seem to become more real, or one may mimic others or behaviours to feel more in control over situations.7
  • Obsessive behaviour: Described behaviours can often preoccupy individuals and use much of their attention. Some may additionally develop other areas of focus, usually in relation to people, that can present in a variety of ways, including attachment, dislike, blame or aggression.7

 

A toolkit reviewer reflected, “Given how common it is that Autistic people say ‘no’ when presented with something novel, and how difficult it can be to change our minds, it seems to me that there may be degrees of demand avoidance. Some people can be driven to react with physical aggression to avoid or remove the threat, while other are quiet and become inert—unable to move to get the task done.”

 

*POINT TO PONDER: THE POTENTIAL CHALLENGES EXPERIENCED BY INDIVIDUALS WITH PDA EMPHASIZE THE IMPORTANCE OF GREATER UNDERSTANDING AND SUPPORT FOR THE INDIVIDUAL!

 

Dr. Lawson and others see PDA in the context of monotropism in autism (for further information, see an informative presentation at: https://www.youtube.com/watch?v=V0Erq-5EyLY ; presentation by Richard Woods.) Monotropism in autism suggests that many Autistic people may have specific attentional focus (or as some have termed it, an “attentional tunnel”). Essentially, we devote attention to complete a given task based on our interest or understanding.15 To do a task, the person must understand the task, see a point in doing/completing the task, and understand what needs to be done. Researchers suggest that monotropic individuals may have difficulty with tasks that require attention in multiple areas or a number of steps to complete. A monotropic focus suggests that a person can effectively focus on a task that is motivating or of interest, but have difficulty focusing when a task/area is neither motivating nor of interest.15 Further, requirements or demands that are not seen as relevant or create unwanted demands, can create substantial anxiety.

 

A reviewer noted, “An Autistic person may be unable to see the value or relevance of undertaking a task like making the bed (it’s just going to get messed up again), or of loading everyone’s dishes in the dishwasher (they didn’t make all the dishes dirty). When the task is not motivating, holds no interest, and the individual doesn’t see why the task is relevant to them, we may see demand avoidant behaviour [as] the individual devotes attention to a task based on interest or understanding.” Later in the toolkit, Dr. Lawson speaks to how anxiety can result in demand avoidance. 

 

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6.  Determining PDA

Following the initial characterization of PDA,7 its characteristics have undergone adaptation in assessment tools which, so far, are meant for research purposes (rather than for diagnosis). Assessments tools include the (1) Diagnostic Interview for Social and Communication Disorders (DISCO), (2) the Coventry Grid Interview, and (3) the Extreme Demand Avoidance Questionnaires (EDA-Q; EDA-QA; EDA-8). Each are briefly described below, and copies of available tools are provided.

 

    6.1 - Diagnostic Interview for Social and Communication Disorders (DISCO)

    PDA traits were originally incorporated into the Diagnostic Interview for Social and Communication Disorders (DISCO) , an assessment tool for identifying autism, in the early 2000s.16 O’Nions and colleagues17 reviewed the 12th version of the DISCO (DISCO-12) to try and distinguish presentations of PDA from or within autism. Their study identifies that 11 traits out of a list of 17 behaviour areas originally associated with PDA are useful to assess for it. However, the study is noted as exploratory, and requires more testing before being used in PDA identification.17

     

    6.2 - Coventry Grid Interview

    The Coventry Grid Interview18 was developed to help distinguish between characteristics of autism and attachment disorders. A modification was proposed by Eaton and colleagues to include demand avoidant behaviours as identified in earlier descriptive profiles, with the additional inclusion of sensory differences.6

    This tool is limited by the absence of a “diagnostic cut-off score,” and the lack of reliability evidence.6 It is meant as a guide rather than an independent diagnostic tool. A copy of the Coventry Grid Interview modification is included in Appendix 1 within the following document:

    https://www.pdasociety.org.uk/wp-content/uploads/2019/07/GAP-Eaton-et-al.pdf

     

    6.3 - Extreme Demand Avoidance Questionnaire

    O’Nions and colleagues published the Extreme Demand Avoidance Questionnaire (EDA-Q).19 It was originally designed for caregiver-assessment of children ages 5-17 years.19 The EDA-Q has been adapted for use with autistic adults without intellectual disabilities (EDA-QA),20 and revised (entitled EDA-8) for children.21 In particular, the EDA-8 has been shortened to include only 8 assessment areas.21 There is limited testing of the EDA-Q19-21 variants or components so additional testing is needed. Copies of the EDA-8 and EDA-QA are available publicly (links below).

    EDA-8: https://www.pdasociety.org.uk/wp-content/uploads/2022/09/EDA8.pdf

    EDA-QA: https://embrace-autism.com/eda-qa/#test

 

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7.  Underlying Contributors

There is limited research exploring underlying causes or contributors to PDA. The most common thinking identifies anxiety or the intolerance of uncertainty (IU) as possibly resulting in demand avoidant behaviours.3-5,12,22-23 Other potential contributors to PDA may be trauma10 or negative experiences,24 and other mental health struggles.3 Anxiety is particularly identified in non-academic reports written by self-advocates.25

Recent studies seem to indicate a relationship between demand avoidant behaviours and anxiety5 or anxiety and IU.4,23 In addition to autistic traits, anxiety may increase PDA in the adult general population.5 There is early evidence showing that anxiety may be a stronger predictor of demand avoidant behaviours in Autistic adults4 while IU may be a strong predictor for Autistic children.23  Dr. Lawson offers his perspective on the relationship of anxiety and PDA:

 

 

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8.  Considering Sensory and Experiential Differences

Researchers describe sensory differences as the potential presence of over- and under-sensitivity and challenges with interoception, or the ability to identify or distinguish bodily sensations or emotions.6 It was identified that challenges with interoception may contribute to seemingly sudden mood shifts if early bodily signals are missed.6

A toolkit reviewer noted, “[Physical sensations created by] sensory differences may also be a cause of demand avoidance. The human brain is motivated to do things that feel good, and motivated to ‘avoid’ things that feel bad. This means a child may never want to cooperate in taking a shower if the water feels like needles, or brushing teeth if that is difficult in terms of tactile processing and motor skills. It would be helpful for parents and others to at least consider this point.” Another toolkit reviewer added, “Underlying physical health conditions such as gastrointestinal issues, allergies, or chronic pain can impact an individual's comfort level, sensory experiences, and ability to cope with demands, potentially influencing their behavior and responses.”

 

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9.  Supporting Individuals and Families

There is need to support individuals and families experiencing the effect of demand avoidant behaviours.3-4,7,12,20 PDA can significantly affect family dynamics, relationships, education, employment and overall well-being.12, 24-28 Parents and/or other carers identify that a common challenge related to PDA is insufficient understanding and support from professionals12 as well as from others.29 The PDA Society in the UK11 notes distress and anxiety among individuals self-identifying PDA. Adding to this challenge for individuals and caregivers/supporters, there is a lack of awareness and understanding of PDA in our communities and society in general. Dr. Lawson speaks about the impact on families:

 

 

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10.  What Not to Do?

Reinforcement approaches, such as punishment, contingent rewards and clear boundaries, usually don’t work in cases of demand avoidant behaviours.29 The PDA Society in the UK suggests that “conventional approaches based on firm boundaries, routine and structure and the use of rewards, consequences and praise, are often ineffective, and even counter-productive.”11 A reviewer added, “One example of this occurs if parents take away a child’s preferred interest as punishment for not completing homework, or not doing their chores. A child with PDA may exist in a state of high anxiety without the coping strategy they usually use to self-calm. This can affect responses, and a parent may witness more dramatic loss of emotional control from their child, and reduced ability to focus on essential tasks.”

 

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11.  What Can Help?

Tailored, individualized support from knowledgeable professionals is recommended.11-12 Researchers state that, “affirmation and support… is essential” to support mental health and well-being.12 One study on parenting strategies used by parents of Autistic children exhibiting behaviours classified as challenging, includes strategies such as accommodation approaches and reducing uncertainty.29 These strategies are consistent with the PDA literature as they can increase a sense of being in control and support the management of challenging behaviours.

 

The PDA Society in the UK11 offers information about PDA, including strategies, lived experiences, and other helpful information tailored for individuals, caregivers and professionals. One strategy ( https://www.pdasociety.org.uk/wp-content/uploads/2021/09/Helpful-approaches-for-parents-and-carers.pdf ),  suggests the following approaches, based on the acronym “PANDA” :

  • Pick your battles: Minimize challenging rules, enable choice and control, explain reasons, and accept that there are things that can’t be done, as possible seek synchrony of needs and tasks to be done. For example, if a person is avoiding getting dressed, but wants to eat at their favourite restaurant, consider waiting to have them get dressed until closer to mealtime.
  • Anxiety management: Support a low arousal approach, decrease uncertainty, realize that anxiety and social/sensory issues may be challenging, plan ahead, realize that a distress behavior/response is an anxiety response, be supportive and don’t linger on issues causing anxiety, assist with an agreed-upon exit strategy to remove oneself from high anxiety situations.
  • Negotiation and collaboration: Remain calm and collaborative, ensure fairness and trust, remember that our aim is more than “short-term compliance”, agree with the individual on what are non-negotiable boundaries (which may vary given one’s level of anxiety).
  • Disguise and manage demands: Avoid confrontative demands and recognize that indirect requests (e.g., physical and visual prompts, choices with control, role play) may be received more positively, monitor tolerance for demands, engage together.
  • Adaptation: Employ ways of incorporating elements such as humor, distraction and roleplay, ensure flexibility and alternatives, take sufficient time, i.e., don’t rush, create space for “give and take.”

How PDA is experienced and manifested will be unique from person to person. Adapting to what is helpful to the individual is recommended. Also, support and self-care for caregivers is important, and may include engagement with others who are having similar experiences. Peer support may decrease isolation and offer ideas for moving forward. Dr. Lawson shares some further advice and strategies:

 

 

Dr. Lawson offered suggestions to support the young person without making demands. He noted the following examples:

  • Provide a choice between two options. Rather than saying, “Put on your shoes,” try something like, “Sneakers or boots today?”
  • Model behaviour or thought processes. Rather than saying, “You have to put on your mittens”, try something like, “Oh it’s snowing today, I think I need to put on my mittens to stay warm outside.”
  • Set up a situation for the child/young person to volunteer or start on their own initiative. Rather than saying, “Can you put away the toys?”, try something like, “Oh no, the toys are hiding. Do you think you can find them all?”
  • Follow the child/young person’s lead. Ask what is helpful to them or what they need. Everyone is different and they may be able to share what is hard or what works well for them.

 

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12. Resources for Self-Advocates, Parents and Supporters

Without PDA being more fully recognized, both information and resources are yet limited. But despite these gaps, some therapies may be helpful. Occupational, speech and language, and play therapies have been reported by families in Ireland to be helpful with demand avoidant behaviours.12 A toolkit reviewer provided some assessment areas that may help parents (or others) identify or address potential demand avoidance in the absence of more formal recognition. In navigating the expectations of a neurotypical world, the reviewer suggested that these kinds of strategies may help to reduce anxiety that otherwise might heighten demand avoidance:

  • Sensory Processing.Are sensory experiences causing or contributing to demand avoidance? To know how the child is experiencing the physical/sensory world, it is important to have a comprehensive sensory and motor assessment. If a painful or frightening sensory experience is addressed, the demand resistance may be reduced or eliminated.
  • Executive Functioning. An assessment of a child/young person's executive functioning skills can identify challenges in areas of functioning like initiating, organizing, emotional regulation, prioritizing and more. Once aware that some of these areas need to be addressed, appropriate teaching approaches and accommodations can be put in place to offer support. Again, this has the potential to reduce demand avoidance.
  • Learning Style. A comprehensive psychoeducational assessment in school can be used to develop teaching approaches and assessment accommodations that can help a student be more successful in school. This success may reduce a child's demand avoidant strategy to save themselves from feeling discouraged from being corrected continuously throughout the academic day. This can help them build skills and reduce anxiety that results from being told to do work they do not understand — anxiety that possibly results in demand avoidance.
  • Processing Speed. One of the cognitive areas that is assessed in a psycho-educational assessment is processing speed. Some Autistic people may need more time to respond to what they have seen or heard. As a consequence, they may feel rushed throughout the day. Perhaps they get ready for the day too slowly for the family’s schedule, or perhaps they are made to feel that they take too long to do their homework or to respond to a communication partner. The anxiety they may experience related to feeling “behind” in much of what they do can contribute to demand avoidance. Why start something when you know your perceived flaws are going to be called out, including how much you inconvenience others? 
  • Social Communication Skills. Address potential challenges in social/communication skills and engagement, such as literal interpretation of language or asking for help, has the potential to reduce demand avoidance. If a child misunderstands the intention of a question, even when they know the answer, they may struggle providing a response or do poorly on a test. They may not know the words to describe the difficulty they are having, experience anxiety over needing to ask follow-up questions, or don’t want someone to think they are not very bright or aren’t paying attention. These types of challenges can make them extremely anxious in situations where an accurate understanding of language is essential. It is surprising, then, that an Autistic student may avoid tests and exams? They don't want to feel ‘dumb’ and so they may protect themselves by actively avoiding the demand to study, or even to attend the exam. Given the right accommodations in an individual education plan (IEP) or letter of accommodations at post-secondary school – such as ‘clarification of questions’, the student may have better opportunity to demonstrate their knowledge and avoid feeling shame. Teaching Autistic people to ask for help at a very young age possibly offers potential to reduce demand avoidance, as they may feel competent and confident with the task and therefore not avoid it.

 

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13. Further Information Related to PDA

Resources are available. Here is a brief, non-exhaustive list of resources that may be helpful to individuals or families. Please be aware that some resources may discuss region-specific supports.

  • The PDA Society in the UK11 is a helpful and comprehensive website that curates a variety of resources, including lived experiences, strategies and updates on literature for individuals, caregivers and professionals.

 

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14. References

  1. PDA Society (n.d.). What is demand avoidance? https://www.pdasociety.org.uk/what-is-pda-menu/what-is-demand-avoidance/
  2. Gillberg, C., Gillberg, I. C., Thompson, L., Biskupsto, R., & Billstedt, E. (2015). Extreme (“pathological”) demand avoidance in autism: a general population study in the Faroe Islands. European Child & Adolescent Psychiatry24(8), 979–984. https://doi.org/10.1007/s00787-014-0647-3
  3. Kildahl, A. N., Helverschou, S. B., Rysstad, A. L., Wigaard, E., Hellerud, J. M., Ludvigsen, L. B., & Howlin, P. (2021). Pathological demand avoidance in children and adolescents: A systematic review. Autism25(8), 2162–2176. https://doi.org/10.1177/13623613211034382
  4. Johnson, M., & Saunderson, H. (2023). Examining the relationship between anxiety and pathological demand avoidance in adults: a mixed methods approach. Frontiers in Education (Lausanne)8. https://doi.org/10.3389/feduc.2023.1179015
  5. White, R., Livingston, L. A., Taylor, E. C., Close, S. A. D., Shah, P., & Callan, M. J. (2023). Understanding the Contributions of Trait Autism and Anxiety to Extreme Demand Avoidance in the Adult General Population. Journal of Autism and Developmental Disorders53(7), 2680–2688. https://doi.org/10.1007/s10803-022-05469-3
  6. Eaton, J., Duncan, K., Hesketh, E. (2018). Modification of the Coventry Grid Interview (Flackhill et al, 2017) to include the pathological demand avoidant profile. Good Autism Practice, 19(2), 12–24.
  7. Newson, E., Le Maréchal, K., & David, C. (2003). Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Archives of Disease in Childhood88(7), 595–600. https://doi.org/10.1136/adc.88.7.595
  8. Milton, D.(2013). 'Natures answer to over-conformity': deconstructing Pathological Demand Avoidance. Published online: https://kar.kent.ac.uk/62694/431/Natures%20answer%20to%20over%20conformity.pdf
  9. Gillberg, C. (2014). Commentary: PDA - public display of affection or pathological demand avoidance? - reflections on O’Nions et al. (2014). Journal of Child Psychology and Psychiatry55(7), 769–770. https://doi.org/10.1111/jcpp.12275
  10. Woods, R. (2019). Demand avoidance phenomena: Circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference. Good Autism Practice, 20(2), 28-40.
  11. PDA Society (2023). PDA and mental health research briefing. Published online: https://www.pdasociety.org.uk/wp-content/uploads/2023/11/PDA-and-mental-health-briefing.pdf
  12. Doyle, A., & Kenny, N. (2023). Mapping experiences of pathological demand avoidance in Ireland. Journal of Research in Special Educational Needs23(1), 52–61. https://doi.org/10.1111/1471-3802.12579
  13. Green, J., Absoud, M., Grahame, V., Malik, O., Simonoff, E., Le Couteur, A., & Baird, G. (2018). Pathological demand avoidance: symptoms but not a syndrome. The Lancet Child & Adolescent Health2(6), 455–464. https://doi.org/10.1016/S2352-4642(18)30044-0
  14. O’Nions, E., & Eaton, J. (2020). Extreme/‘pathological’ demand avoidance: an overview. Paediatrics and Child Health30(12), 411–415. https://doi.org/10.1016/j.paed.2020.09.002
  15. Murray, D., Lesser, M., & Lawson, W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2). 139-156. https://doi.org/10.1177/1362361305051398
  16. Wing, L., Leekam, S. R., Libby, S. J., Gould, J., & Larcombe, M. (2002). The Diagnostic Interview for Social and Communication Disorders: Background, inter-rater reliability and clinical use. Journal of Child Psychology and Psychiatry43(3), 307–325. https://doi.org/10.1111/1469-7610.00023
  17. O’Nions, E., Gould, J., Christie, P., Gillberg, C., Viding, E., & Happé, F. (2016). Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO). European Child & Adolescent Psychiatry25(4), 407–419. https://doi.org/10.1007/s00787-015-0740-2
  18. Flackhill, C., James, S., Soppitt, R. and Milton, K. (2017). The Coventry Grid Interview (CGI): Exploring autism and attachment difficulties. Good Autism Practice, 18(1), 62–80.
  19. O’Nions, E., Christie, P., Gould, J., Viding, E., & Happé, F. (2014a). Development of the “Extreme Demand Avoidance Questionnaire” (EDA-Q): preliminary observations on a trait measure for Pathological Demand Avoidance. Journal of Child Psychology and Psychiatry55(7), 758–768. https://doi.org/10.1111/jcpp.12149
  20. Egan, V., Linenberg, O., & O’Nions, E. (2019). The measurement of adult pathological demand avoidance traits. Journal of Autism and Developmental Disorders49(2), 481–494. https://doi.org/10.1007/s10803-018-3722-7
  21. O’Nions, E., Happé, F., Viding, E., & Noens, I. (2021). Extreme demand avoidance in children with autism spectrum disorder: Refinement of a caregiver-report measure. Advances in Neurodevelopmental Disorders5(3), 269–281. https://doi.org/10.1007/s41252-021-00203-z
  22. O’Nions, E., Viding, E., Greven, C. U., Ronald, A., & Happé, F. (2014b). Pathological demand avoidance: Exploring the behavioural profile. Autism: The International Journal of Research and Practice18(5), 538–544. https://doi.org/10.1177/1362361313481861
  23. Stuart, L., Grahame, V., Honey, E., & Freeston, M. (2020). Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents. Child and Adolescent Mental Health25(2), 59–67. https://doi.org/10.1111/camh.12336
  24. Brede, J., Remington, A., Kenny, L., Warren, K., & Pellicano, E. (2017). Excluded from school: Autistic students’ experiences of school exclusion and subsequent re-integration into school. Autism & Developmental Language Impairments2, 239694151773751-. https://doi.org/10.1177/2396941517737511
  25. Cat, S. (2018). PDA by PDA-ers: From anxiety to avoidance to masking to meltdowns. Jessica Kingsley.
  26. Gore Langton, E., & Frederickson, N. (2016). Mapping the educational experiences of children with pathological demand avoidance. Journal of Research in Special Educational Needs16(4), 254–263. https://doi.org/10.1111/1471-3802.12081
  27. Running, A. & Jata-Hall, D. (2023). Parental blame and the PDA profile of autism. PDA Society. https://www.pdasociety.org.uk/wp-content/uploads/2023/02/Parental_Blame_PDA_Research_Report_Running_JataHall.pdf
  28. Truman, C., Crane, L., Howlin, P., & Pellicano, E. (2021). The educational experiences of autistic children with and without extreme demand avoidance behaviours. International Journal of Inclusive Education28(1), 57–77. https://doi.org/10.1080/13603116.2021.1916108
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  30. PRISM PDA Ireland (2020). Family support across the spectrum. Published online: https://www.prismdlr.com/pda-ireland

 

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