Assessment & Research

Pathological Demand Avoidance in a population-based cohort of children with epilepsy: four case studies.

Reilly et al. (2014) · Research in developmental disabilities 2014
★ The Verdict

Kids with epilepsy who fight everyday demands may also fit a PDA profile, so probe refusal patterns before assuming ADHD or defiance alone.

✓ Read this if BCBAs in medical clinics or schools serving children with epilepsy and challenging behavior.
✗ Skip if Practitioners working with adults or with seizure-free clients showing only stereotypy.

01Research in Context

01

What this study did

Reilly et al. (2014) followed four children who had epilepsy and tough, daily refusal behaviors.

The team watched how the kids reacted to normal requests like “put your shoes on.”

They also tracked other diagnoses each child carried, such as autism, ADHD, or intellectual disability.

02

What they found

Every child showed strong signs of Pathological Demand Avoidance, a pattern of extreme avoidance of everyday demands.

Each child also had two or more extra diagnoses, showing that behavior challenges stacked up.

The authors say clinicians should add PDA screening when epilepsy and behavior issues mix.

03

How this fits with other research

Winburn et al. (2014) looked at kids with PDA but without epilepsy and saw the same social struggles plus worse conduct and mood problems.

Together the two 2014 studies paint a fuller picture: PDA looks similar whether epilepsy is present or not.

Johnson et al. (2021) later warned that almost all PDA studies, including this one, rely only on parent report and fuzzy criteria, so we should view any PDA label as tentative until better tools arrive.

Sundram (2011) notes that children with epilepsy often get ADHD diagnoses, so Colin’s group reminds us to look beyond ADHD and consider PDA when refusal is extreme.

04

Why it matters

If you work with a child who has seizures and melts down when asked to do simple tasks, add PDA items to your intake forms. Use flexible, low-demand teaching styles first while you gather data. This small case set tells you epilepsy plus multi-diagnosis flags may hide PDA, and catching it early can shape smoother sessions and better collaboration with medical teams.

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Add two PDA screening questions to your intake and trial a choice-based, low-demand instruction format during the first trial.

02At a glance

Intervention
not applicable
Design
case series
Sample size
4
Population
autism spectrum disorder, intellectual disability, adhd, other
Finding
not reported

03Original abstract

Childhood epilepsy is associated with a range of neurobehavioural comorbidities including Attention-Deficit/Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), motor impairments and emotional problems. These difficulties frequently have a greater impact on quality of life than seizures. Pathological Demand Avoidance (PDA) is a term increasingly in use in the UK and Europe to describe behaviours associated with an extreme resistance to demands and requests and the need to be in control in social interactions. In a population-based group of 85 children with epilepsy, four (5%) were identified as displaying significant symptoms of PDA, were assessed using the Extreme Demand Avoidance Questionnaire (EDA-Q) and are described in detail. As well as significant symptoms of PDA, the four children met criteria for a range of neurobehavioural disorders; all four had cognitive impairment (IQ<85) and met DSM-IV-TR criteria for ADHD. Three, in addition, met criteria for ASD and Developmental Coordination Disorder (DCD) and two for Oppositional Defiant Disorder (ODD). All four experienced their first seizure before 5 years of age. School and parent reports indicated very significant functional impairment and management concerns, particularly with respect to complying with everyday demands. Symptoms of PDA should be considered when evaluating neurobehavioural comorbidity in childhood epilepsy.

Research in developmental disabilities, 2014 · doi:10.1016/j.ridd.2014.08.005