Research Tuesday: Pathological demand avoidance in children and adolescents: A systematic review
Attwood & Garnett Events | Tony Attwood & Michelle Garnett
80+ Years Advancing Autism: Expert Training, Resources & Neuro-affirmative Advocacy by Autism & Autistic Specialists
This paper is an important one, because it brings together 13 studies that met rigorous criteria for inclusion in the systematic review, to inform us about what we know from research to date on PDA in children and adolescence.
The studies reviewed were chosen because they demonstrated clearly defined inclusion criteria and adequate descriptions of the participants and the setting of the study. All the studies used criteria developed by Professor Elizabeth Newson, who originally provided descriptions of PDA.
The systematic review was undertaken according to best practice principles, and data was extracted using a qualitative method, which is a narrative and descriptive approach.
Of the 13 studies, 11 were conducted in the UK, and 650 participants were involved across the studies, 36% of whom were female and 64% male.
The researchers decided to limit the search to only children and adolescence, because of the very low number of studies on adults with PDA, and the low quality of the ones that do exist.
Limitations of the studies:
1. All of the studies had significant methodological limitations, one of the greatest of these was that none of the studies included information about PDA from individuals with PDA themselves.
2. There is only one questionnaire available now for screening for PDA, The Extreme Demand Avoidance Questionnaire (EDA-Q), and this was used in seven of the included studies.
3. There were no longitudinal studies of PDA behaviours, so information is lacking about demand avoidance behaviours over time, causal factors, and context.
4. All of the studies were conducted in Western Europe and mainly in the UK, so knowledge from other countries and cultures is lacking.
Findings and Discussion:
This review suggested that there is a subset of autistic children and adolescence who display behaviours involving persistent avoidance of perceived demands.
Findings from three of the studies suggested that PDA and anxiety are linked, and one in particular noted the relationship between PDA and intolerance of uncertainty. The authors discussed the difficulty of using parental ratings of anxiety because these don’t always seem to be in line with reports from autistic individuals themselves. Additionally, there is the “double empathy problem“ where other people do not read autistic people very well. The authors discussed the possibility of a “dialectical misattunement” as a potentially underlying factor being experienced by autistic people. Perhaps this difficulty in recognising autistic anxiety and not responding to soothe the child when they are anxious may lead to that child feeling misunderstood and alone. To alleviate their own distress, the child may then engage in behaviours that are perceived by others as being “inappropriate” or “disruptive”, which would lead over time to “problematic” strategies, such as the signs and symptoms of PDA.
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Directions for future research:
The authors suggest that understanding PDA from transactional perspectives, such as the one described above, may be helpful.
They suggest focusing on the demands that illicit PDA behaviours, since these have not been studied, only the behaviours.
They recommend more research into the relationship between PDA and other conditions, such as anxiety, depression, and trauma related disorders, and other neuro diverse profiles, such as ADHD.
They call for further validation of the EDA-Q with independent research teams and larger samples.
There is no research yet on treatment protocols for PDA, and it is needed.
The author's overall conclusion was that the profound challenge faced by some individuals and their families due to extreme demand avoidance behaviours has been demonstrated and that evidence to date from research does not clearly show that PDA is either a separate disorder or a profile of autism.
Please note that Tony and Michelle take this study, other studies and their own considerable clinical experience to inform their own current perspective is that PDA is a profile of autism, that it is useful to recognise it and that there are strategies that can help the person with PDA and their families. They agree that more research is needed in the areas described.
Reference: 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(2162-2176. https://doi.org/10.1177/13623613211034382
Where to from here?
We have created two half-day online courses exploring PDA in children, adolescents and adults:
PDA and Autism: This training aims to increase your understanding of PDA to assist you in recognising the profile of your child, student or client, to increase your confidence in your role with these children and equip you with strategies to maximise positive outcomes.
PDA for Professionals: 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.