PDA: Diagnosis and Providing Support

A dilemma faced by healthcare providers who are asked to provide diagnostic, therapy or support services for clients seeking assessment, support or treatment for PDA is knowing what to do in the face of so many unanswered questions. In this article we share our own conceptualisation of PDA, consideration for diagnosing PDA, and how to support a child or adult with PDA, including our list of favourite resources.

Diagnosing PDA

Over many years we have followed the research on PDA, listened to families and individuals with PDA, read autobiographies, consulted with experts on PDA and we here present ideas for professionals that we have found useful in our own practice. We understand PDA as a recognisable and measurable profile that for the moment, just like autism, is diagnosed based on behaviours rather than physiological signs and is relatively rare. Currently, the causes of PDA are unknown but appear to be multi-factorial, including genetic, neurological, psychological, and transactional. We understand PDA to be a subtype of autism with the following features, based on research and our own clinical experience. The features with some research support are denoted with an asterisk. The other features are yet to be researched as being part of the PDA profile and are based on our clinical experience and consultation with experts.

• Often show positive personality qualities including having charisma, and a good sense of humour and are often considered likeable, chatty, and fun to be with when not asked to co-operate with a request.

• Meets diagnostic criteria for autism.*

• Difficulties cooperating with requests by others or self for certain behaviours, even though these behaviours can be within capacity at other times, e.g. teeth-cleaning, putting on shoes.*

• Can use social skills, for e.g., compliments, to deflect requests from others.*

• Struggles to understand their own self-identity.*

• Can use socially shocking behaviour, eg, loud swearing, to deflect requests.*

• Can make friends but struggles to keep them due to difficulties with reciprocity.*

• Is comfortable with role-play and adopting personas.*

• Poor cognitive empathy (ability to read nonverbal communication) abilities that are most apparent in their lack of understanding of social hierarchy.*

• High affective empathy abilities which can be inaccessible during times of high autonomic arousal leading to an inability to consider the impact of their behaviour on others at that time.

• Feel sadness and/or remorse when autonomic arousal levels have decreased.

• Obsessions/fixations can be with topics, which can change rapidly over time, but most commonly with demand avoidance and with certain people*

• Has a different sensory processing system.

• Is highly associated with ADHD, so needs assessment for ADHD if there is no diagnosis already.

• Repeated experience of failure due to not being able to manage the everyday task of living (not “I won’t” but “I can’t”) and sometimes due to executive functioning difficulties despite at least average intelligence. The experience leads to a lack of sense of self-agency and overcompensation for this by trying to control others. Over time avoidance of some tasks may be due to anticipation of failure as a secondary cause of avoidance.

• Struggles with all aspects of self-regulation,* has insight into this and feels intense shame.

• Own distress is felt intensely.

• Tends to be socially motivated and wishes for friends,* but finds difficulty maintaining friends because of demand avoidance and a need to dominate and control others.

• Highly anxious, especially about uncertainty*, but not necessarily able to describe their subjective feelings of anxiety or understand the link between anxiety and demand avoidance. May not be diagnosed with an anxiety disorder because anxiety is managed effectively with demand avoidance.

• Atypically functioning autonomic nervous system (ANS), hyper-aroused sympathetic nervous system (SNS) and under-aroused parasympathetic nervous system (PNS).*

• Low vagal tone.*

• May have experienced trauma.

• Has learned over time the social and antisocial behaviours that will most successfully lead to demand avoidance, and these behaviours steadily increase.*

• Tends to use personas, masking, and camouflaging.*

• Is exhausted by anxiety, socialising and masking and is prone to autistic burnout.*

We recommend this excellent resource for diagnosticians.

Supporting the child or adult with PDA and their family

On the basis of our conceptualisation of PDA, we assess each of the above areas which informs our conceptualisation of where best to intervene and the order of priorities for the person and their family or partner. Below is a summary of ideas to help.

Initial

• Provide validation and support for the family’s extreme daily stress and difficulty, including the child/adult with PDA and their siblings/partner.

• Provide the results of the assessment and your hypotheses based on your assessment about why demand avoidance started and is maintained.

• Provide psychoeducation about autism, the PDA profile of autism, ADHD, camouflaging, anxiety and how demand avoidance may be being maintained by any transactional patterns recognised.

• Teach management strategies for demand avoidance.

• Decrease background stress – environmental accommodations for sensory issues.

• Treat ADHD – the first line approach for ADHD is medication, gain referral to a psychiatrist to discuss.

• Treat any eating and sleep issues.

• Treat anxiety with medication if indicated.

Later

(Once the person with PDA is eating, sleeping, and is better regulated)

• Psychoeducation for the person about PDA (based on person), within the broader context of understanding their self-identity.

• Teach the person how to recognise anxiety, and address alexithymia and trauma if needed.

• Teach the person autonomic arousal reduction strategies.

• If the person can support it, start exposure therapy for anxiety. Goals for therapy are determined by the person.

Adult PDA

The structure for providing support and therapy to the adult with PDA will be similar to that of a child but may include their partner or carer and family members, depending on how involved they are in the adult’s life.

Clinical experience indicates that the range of outcomes for individuals with PDA is variable, with some adults being able to ‘over-ride’ their PDA and complete life goals that are important to them, such as being educated, employed, having friends and a partner, and raising a family. It is important that the therapeutic goals are realistic and set by the adult with PDA. Others continue to need significant support to achieve everyday tasks throughout their adult lives.

Where to from Here?

If you are interested in learning more about PDA, whether you are a parent, professional or adult PDA-er, we recommend our on-demand courses:

PDA and Autism: An Introduction – The purpose of this training is to increase your understanding of PDA to assist you to recognise the profile, to increase your confidence in your role or yourself, and equip you with strategies to maximise positive outcomes.

PDA and Autism: Going Deeper – We assume the knowledge presented in the first course and go deeper to explore strategies and how to best support the PDA-er and their family or partner.

Resources

There are many resources available. These are some of our favourites:

The PDA Society in the UK has developed a library of helpful, evidence-based resources on PDA and we highly recommend their Practice Guidance Document as a start.

Dr Ross Greene, American Psychologist has developed a model of care called Collaborative & Proactive Solutions (CPS) which is based on research and practice and based on collaboration and compassion. He does not use the term PDA, but instead talks about kids for whom challenging behaviour occurs when the demands and expectations being placed on them exceed their capacity to respond adaptively. His website has excellent practical resources for parents, teachers and health professionals.

livesinthebalance.org

Books

Children and teenagers

Collaborative Approaches to Learning for Pupils with PDA: Strategies for Education Professionals (2018) by Ruth Christie and Phil Fidler, published by Jessica Kingsley Publishers.

Super Shamlal – Living and Learning with Pathological Demand Avoidance (2019) by K I Al-Ghani, published by Jessica Kingsley Publishers.

Dr Ross Green (2021). The Explosive Child [Sixth Edition]: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children. Published by Harper Collins, US.

Adults

Being Julia: A Personal Account of Living with PDA (2021). By Ruth Fidler and Julia Daunt. Published by Jessica Kingsley Publishers.

PDA by PDAers: From Anxiety to Avoidance and Masking to Meltdowns (2019). Ed. Sally Cat. Published by Jessica Kingsley Publishers.

PDA Paradox; The Highs and Lows of My Life on a Little Known Part of the Autism Spectrum. (2019). By Harry Thompson. Published by Jessica Kingsley Publishers.

There are many more wonderful books on PDA that we can recommend, as listed on this web page of the PDA Society:

PDA Society Book List

References

Bettelheim, Bruno. The Empty Fortress: Infantile Autism and the Birth of the Self. New York: Free Press, 1967.

Calvo F, Karras BT, Phillips R, Kimball AM, Wolf F. Diagnoses, syndromes, and diseases: a knowledge representation problem. AMIA Annu Symp Proc. 2003;2003:802. PMID: 14728307; PMCID: PMC1480257.

Christie, R. & Fidler, F. (2018). Collaborative Approaches to Learning for Pupils with PDA: Strategies for Education Professionals. Jessica Kingsley Publishers, London, UK.

Eaton, J. & Weaver, K. (2020). An exploration of the Pathological (or Extreme) Demand Avoidant profile in children referred for an autism diagnostic assessment using data from ADOS-2 assessments and their developmental histories. GAP, 21 (2), 33- 51

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 Psychiatry, 55(7), 769–770. https://doi.org/10.1111/jcpp.12275

Gore Langton E., Frederickson N. (2018). Parents’ experiences of professionals’ involvement for children with extreme demand avoidance. International Journal of Developmental Disabilities, 64(1), 16–24. https://doi.org/10.1080/20473869.2016.1204743

Kerns C. M., Winder-Patel B., Iosif A. M., Nordahl C. W., Heath B., Solomon M., Amaral D. G. (2020). Clinically significant anxiety in children with autism spectrum disorder and varied intellectual functioning. Journal of Clinical Child & Adolescent Psychology. Advance online publication. https://doi.org/10.1080/15374416.2019.1703712

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. Autism, 25(8), 2162–2176. https://doi.org/10.1177/13623613211034382

Milton D. E. (2012). ‘Natures answer to over-conformity’: Deconstructing pathological demand avoidance. Autism Experts. https://kar.kent.ac.uk/62694/

Milton D. E. (2013). ‘Natures answer to over-conformity’: Deconstructing pathological demand avoidance. Autism Experts. https://kar.kent.ac.uk/62694/

Mitchell, P. (2017). Mindreading as a transactional process: Insights from autism. In V. Slaughter & M. Rosnay (Eds.), Environmental influences on ToM development, (pp. 157– 172). Hove, UKPsychology Press.

Newson E, Le Maréchal K, & David C. (2003). Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders Archives of Disease in Childhood; 88:595-600.

Orm S., Løkke J. A., Løkke G. E. H. (2019). Pathological Demand Avoidance: en transaksjonell atferdsanalytisk forklaringsmodell uten patologi [Pathological demand avoidance: A transactional behaviour analytic explanatory model without pathology]. Norsk Tidsskrift for Atferdsanalyse, 46(1), 29–43. http://hdl.handle.net/11250/2619601

O’Nions E, Christie P, Gould J, Viding E, Happé F (2014) Development of the ‘Extreme Demand Avoidance Questionnaire’ (EDAQ): preliminary observations on a trait measure for pathological demand avoidance. J Child Psychol Psychiatry 55:758–768

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), Eur Child Adolesc Psychiatry 25:407–419 DOI 10.1007/s00787-015-0740-2

Reilly C., Atkinson P., Menlove L., Gillberg C., O’Nions E., Happe F., Neville B. G. (2014). Pathological demand avoidance in a population-based cohort of children with epilepsy: Four case studies. Research in Developmental Disabilities, 35(12), 3236–3244. https://doi.org/10.1016/j.ridd.2014.08.005

Sally Russell OBE (2023, personal communication). Chair of the PDA Society, UK.

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 Health, 25(2), 59–67. https://doi.org/10.1111/camh.12336