📌5 key takeaways
- Pathological Demand Avoidance (PDA) is a misunderstood neurotype within Autism Spectrum Disorder, characterised by a strong emotional response to demands, even enjoyable ones.
- PDA is not a standalone diagnosis but a subtype of Autism, often identified during Autism Assessments by experienced health professionals.
- Core characteristics of PDA include resisting routine demands, using social strategies to avoid demands, mood swings, obsessive behaviour, and strengths in role play.
- Support for individuals with PDA can involve occupational therapy, speech pathology, and psychological support to address sensory needs, communication skills, and emotional well-being.
- Practical tips for supporting someone with PDA include using non-demanding language, creating predictable routines with choices, and ensuring access to preferred sensory tools.
Pathological Demand Avoidance (PDA) might sound like a relatively new term, but it’s actually decades old.
Elizabeth Newson, a developmental psychologist, came up with the label in the 1980s after noticing a pattern in autistic individuals of avoiding tasks, even ones that were enjoyable or preferred.
So, where did PDA come from? To understand it more, let’s look back at the history of autism.
The history of autism – from the 1940s to now
Before 1980, autism was not widely recognised as a distinct diagnosis.
It was often misunderstood and misclassified, sometimes even being seen as a form of childhood schizophrenia or simply as emotional disturbance.
In the 1940s, Leo Kanner, an Austrian-American psychiatrist, first described “early infantile autism” in a landmark paper that highlighted specific patterns of behaviour such as social withdrawal and communication difficulties.
While Kanner’s paper was pivotal in the understanding of autism, it also included several harmful misconceptions such as the belief that mothers who withheld affection from children were the cause of those children being autistic.
It wasn’t until the release of the DSM-III in 1980 that autism was formally recognised as its own separate diagnostic category, distinct from schizophrenia and other psychiatric conditions. At this time, autism was included under an umbrella term known as Pervasive Developmental Disorder (or PDD).
Unfortunately, the term “pathological demand avoidance” itself does not align with the strengths-based approach the autistic community prefers; ‘pathological’ implies a ‘disease’, which PDA certainly is not. It is one of many different neurotypes, and one that is currently misunderstood.
In fact, there is a growing consensus, from those both with PDA and parenting children with PDA, to use the term ‘Persistent Drive for Autonomy’ instead!
So what is Pathological Demand Avoidance?
Pathological Demand Avoidance (PDA) is a specific profile of autism. It usually manifests as a strong emotional response to any demand or request, even if it involves something an individual enjoys.
PDA is not recognised as an independent syndrome within the Diagnostic and Statistical Manual of Mental Disorders.
However, the more we learn about pathological demand avoidance, the more we are starting to see that it’s highly connected to anxiety, which is where it differs from other behavioural profiles such as Oppositional Defiance Disorder (ODD).
Autistic individuals with a PDA profile have a strong desire to safeguard their independence, and any demand can be seen as a challenge to their autonomy. The PDA Society UK defines it as anxiety related, but PDA can also be caused by sensory stimuli or other reasons that may not be visible at the time.
Individuals with PDA may avoid meaningful conversations about their behaviour, which can be linked to their resistance to responsibilities. Finding appropriate mental health support is crucial for individuals undergoing autism assessments, as their neurodevelopmental profile interacts with their mental health needs.
Children with PDA may challenge the roles of authority figures, such as parents, and exhibit behaviours that signify a disregard for established social rules and norms.
The lack of strong research evidence validating the characteristics associated with pathological demand avoidance within clinical practice impacts the perception and understanding of the condition among healthcare professionals, which can be extremely confusing for those trying to support a person or child with PDA.
Understanding demand avoidance
Demand avoidance is a common trait among individuals with autism, particularly those with Pathological Demand Avoidance (PDA). It is characterised by an intense need to resist or avoid everyday demands, which can be direct or implied.
This behaviour is often driven by a strong desire for personal autonomy and control. In individuals with PDA, demand avoidance can manifest as a persistent and marked resistance to demands, making it challenging for them to cope with daily life.
Understanding demand avoidance is crucial for providing appropriate support and accommodations for individuals with PDA.
How is Pathological Demand Avoidance diagnosed?
PDA isn’t a stand-alone diagnosis, but rather a subtype of autism.
While children with PDA often share characteristics with other autistic children, the approaches to managing their behaviours differ significantly.
You might see PDA referred to in reports as “Autism Spectrum Disorder, characterised by Pathological Demand Avoidance”.
PDA is most likely to be picked up during an Autism Assessment with a health professional who is experienced in working with autistic participants, and has a strong understanding of PDA and its presentation.
Pathological demand avoidance behaviours require specific strategies that differ from traditional methods used for kids with autism. Individuals with PDA may experience meltdowns or panic attacks in response to overwhelming anxiety.
Certain communication strategies can inadvertently trigger anxiety in children with PDA behaviours. PDA was initially proposed as a distinct syndrome by Elizabeth Newson, describing it as a unique profile within the autism spectrum, but there is ongoing debate about its recognition and validity as a separate diagnosis.
Core characteristics of Pathological Demand Avoidance in kids and adults
The core characteristics of PDA include a strong need for control, a tendency to use social strategies to avoid demands, and a high level of anxiety in response to everyday demands.
Individuals with PDA can often exhibit extreme mood swings, obsessive behaviour, and a strong desire for personal autonomy.
They may also display surface sociability, making it challenging to identify their underlying struggles with social interactions.
The PDA Society and other organisations have identified these core characteristics as essential in understanding and supporting individuals with PDA.
6 main traits of pathological demand avoidance behaviours
The PDA Society (which is a fantastic resource for more information on this topic!) identifies six main characteristics of PDA:
- Resisting and avoiding routine and demands of life, such as putting on shoes or brushing teeth. Using puppets and toys to suggest ideas can help depersonalise requests, making them less confrontational for individuals with PDA.
- Avoiding demands by using social strategies, such as negotiation or changing the topic. Individuals with PDA experience a profound resistance to compliance not only with external requests but also with internal demands, such as hunger and the need to use the restroom.
- Differences in social communication; this is a common trait in autistic individuals, and for some might involve ‘masking’ to fit into ableist societal expectations. Demand avoidance behaviours can occur in both autistic and non-autistic children, highlighting the variability and complexity of these behaviours.
- Experiencing excessive mood swings and impulsivity. Using indirect requests instead of direct demands can help reduce anxiety and foster better cooperation.
- ‘Obsessive’ behaviour, often focused on other people. Direct praise can trigger anxiety in individuals with PDA, so using indirect forms of recognition is recommended.
- Strengths in role play and pretending, and sometimes appears more comfortable with this than real-life situations (this feature is not always present)
Extreme demand avoidance
Extreme demand avoidance is a hallmark of PDA, where individuals exhibit an intense resistance to demands that can lead to meltdown or panic attacks. This behaviour is often triggered by direct or implied demands, which can be perceived as a threat to their personal autonomy.
In extreme cases, individuals with PDA may engage in self-injurious or aggressive behaviour to avoid demands. It is essential to recognise the signs of extreme demand avoidance and provide a supportive environment that minimises anxiety and promotes feelings of control.
Pathological demand and autism
The National Autistic Society acknowledges PDA as a profile within the autism spectrum, and research suggests that it is essential to consider PDA when assessing and supporting individuals with autism.
By understanding the relationship between pathological demand and autism, healthcare professionals can provide more effective support and accommodations.
While it’s important to understand the challenges and differences an autistic person with PDA experiences so we can understand the best ways to include and support them, it’s also important to talk about their strengths and unique characteristics that make them valued members of our community!
Autistic individuals with a PDA profile are strong-willed and determined. They are insightful, creative and passionate. They have strong attention to detail and are innovative thinkers. There’s a lot we can learn from autistic people with PDA and the way they approach the world!
Where can you go for PDA support?
Identifying an individual’s strengths and support needs as early as possible can lead to the best outcomes. Avoiding demand words like ‘need’, ‘must’, and ‘now’ can help create a supportive environment and reduce anxiety.
Autistic people with PDA may benefit from working with an occupational therapist to identify their sensory needs and work on ways to meet those in different settings, such as at home, school, or out in the community.
The Child Mind Institute discusses how PDA is characterised by extreme avoidance behaviours in response to demands.
A speech pathologist could support an individual to build their social communication skills, if this is their goal, and identify alternative ways for them to communicate their wants, needs, feelings and opinions, if verbal speech is not practical in specific moments (e.g. when experiencing strong emotions).
A person experiencing demand avoidance may resist various types of daily life demands, which can trigger distress regardless of whether they are pleasant or unpleasant.
A psychologist may be able to provide support to work through emotions or feelings an autistic person with PDA might be experiencing, support their emotional well-being and build confidence. Individuals with PDA may resist compliance not only with direct demands but also with social cues or suggestions that imply an expectation to cooperate.
Providing tailored support is essential for ensuring positive long-term outcomes for individuals on the spectrum.
Supporting PDA kids and their families
The PDA Society is a leading organisation that provides support and resources for individuals with PDA and their families. The society offers guidance on understanding PDA, managing demand avoidance, and creating a supportive environment that promotes personal autonomy and control.
There are also many Facebook groups that are available to support parents and families experiencing PDA, especially with common PDA-related challenges such as ‘school refusal’, also known as ‘school can’t’.
Education professionals, healthcare professionals, and family members can benefit from the society’s resources and training programs, which aim to improve outcomes for individuals with PDA.
At Superyou, we create a more inclusive and supportive environment by acknowledging the unique needs of individuals with PDA, and our clinicians are highly skilled in providing the right support!
Practical tips to support PDA kids at home
Avoid ‘demanding’ words, such as “you need to…” or “don’t…”, which can trigger demand avoidance behaviours.
Instead, reduce demand avoidance by making statements such as “I can see dinner on the table”, or “I wonder if Bluey is on TV?” Using written requests can also help depersonalise demands and make it easier for the person to engage.
Schedules and routines create predictability, which can support an autistic person with PDA to participate in activities.
Make sure you include choices within the schedule, to avoid it feeling like a ‘demand’. Extreme anxiety and demands can trigger panic attacks or meltdowns in individuals with PDA.
However, it’s important to note that depending on the individual, too many choices may be equally overwhelming! We recommend trying two choices initially, and seeing how that is received by your PDA-er.
Meeting sensory needs is so important for all autistic individuals. Whether in therapy or at home, make sure they always have access to preferred sensory tools, and feel safe and comfortable to use these whenever they need to.
Understanding a PDA child’s unique social, sensory, and cognitive sensitivities is crucial for providing effective support.
Knowledge is power for PDA parents and carers!
The more we know, the better we do, which is why it’s so important to ask questions like ‘what is pathological demand avoidance’.
Supporting children with PDA can be challenging for parents and carers, so having an understanding of what PDA is, how PDA works and keeping up to date with the most effective approaches can help.
Our Superyou clinicians are PDA aware and incorporate their knowledge of PDA into a neurodiverse affirming therapy approach.
If you’re interested in finding out more about PDA supports through therapy, or want to chat to one of our friendly allied health professionals about PDA, contact us for more.
