“Charlie” is an eight-year-old child with autism. Her parents are worried because she often responds to requests with insults, aggression and refusal. Simple demands, such as being asked to get dressed, can trigger an intense need to control the situation, fights and meltdowns.

Charlie’s parents find themselves in a constant cycle of conflict, trying to manage her and their own reactions, often unsuccessfully. Their attempts to provide structure and consequences are met with more resistance.

What’s going on? What makes Charlie’s behaviour – that some are calling “pathological demand avoidance” – different to the defiance most children show their parents or carers from time-to-time?

What is pathological demand avoidance?

British developmental psychologist Elizabeth Newson coined the term “pathological demand avoidance” (commonly shortened to PDA) in the 1980s after studying groups of children in her practice.

A 2021 systematic review noted features of PDA include resistance to everyday requests and strong emotional and behavioural reactions.

Children with PDA might show obsessive behaviour, struggle with persistence, and seek to control situations. They may struggle with attention and impulsivity, alongside motor and coordination difficulties, language delay and a tendency to retreat into role play or fantasy worlds.

PDA is also known as “extreme demand avoidance” and is often described as a subtype of autism. Some people prefer the term persistent drive for autonomy or pervasive drive for autonomy.

What does the evidence say?

Every clinician working with children and families recognises the behavioural profile described by PDA. The challenging question is why these behaviours emerge.

PDA is not currently listed in the two diagnostic manuals used in psychiatry and psychology to diagnose mental health and developmental conditions, the current Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and the World Health Organization’s International Classification of Diseases (ICD-11).

Researchers have reported concerns about the science behind PDA. There are no clear theories or explanations of why or how the profile of symptoms develop, and little inclusion of children or adults with lived experience of PDA symptoms in the studies. Environmental, family or other contextual factors that may contribute to behaviour have not been systematically studied.

A major limitation of existing PDA research and case studies is a lack of consideration of overlapping symptoms with other conditions, such as autism, attention deficit hyperactivity disorder (ADHD), oppositional defiant disorder, anxiety disorder, selective mutism and other developmental disorders. Diagnostic labels can have positive and negative consequences and so need to be thoroughly investigated before they are used in practice.

Classifying a “new” condition requires consistency across seven clinical and research aspects: epidemiological data, long-term patient follow-up, family inheritance, laboratory findings, exclusion from other conditions, response to treatment, and distinct predictors of outcome. At this stage, these domains have not been established for PDA. It is not clear whether PDA is different from other formal diagnoses or developmental differences.

Finding the why

Debates over classification don’t relieve distress for a child or those close to them. If a child is “intentionally” engaged in antisocial behaviour, the question is then “why?”

Beneath the behaviour is almost always developmental difference, genuine distress and difficulty coping. A broad and deep understanding of developmental processes is required.

Interestingly, while girls are “under-represented” in autism research, they are equally represented in studies characterising PDA. But if a child’s behaviour is only understood through a “pathologising” or diagnostic lens, there is a risk their agency may be reduced. Underlying experiences of distress, sensory overload, social confusion and feelings of isolation may be missed.

So, what can be done to help?

There are no empirical studies to date regarding PDA treatment strategies or their effectiveness. Clinical advice and case studies suggest strategies that may help include:

• reducing demands
• giving multiple options
• minimising expectations to avoid triggering avoidance
• engaging with interests to support regulation.

Early intervention in the preschool and primary years benefits children with complex developmental differences. Clinical care that involves a range of medical and allied health clinicians and considers the whole person is needed to ensure children and families get the support they need.

It is important to recognise these children often feel as frustrated and helpless as their caregivers. Both find themselves stuck in a repetitive cycle of distress, frustration and lack of progress. A personalised approach can take into account the child’s unique social, sensory and cognitive sensitivities.

In the preschool and early primary years, children have limited ability to manage their impulses or learn techniques for managing their emotions, relationships or environments. Careful watching for potential triggers and then working on timetables and routines, sleep, environments, tasks, and relationships can help.

As children move into later primary school and adolescence, they are more likely to want to influence others and be able to have more self control. As their autonomy and ability to collaborate increases, the problematic behaviours tend to reduce.

Strategies that build self-determination are crucial. They include opportunities for developing confidence, communication and more options to choose from when facing challenges. This therapeutic work with children and families takes time and needs to be revisited at different developmental stages. Support to engage in school and community activities is also needed. Each small step brings more capacity and more effective ways for a child to understand and manage themselves and their worlds.

What about Charlie?

The current scope to explain and manage PDA is limited. Future research must include the voices and views of children and adults with PDA symptoms.

Such emotional and behavioural difficulties are distressing and difficult for children and families. They need compassion and practical help.

For a child like Charlie, this could look like a series of sessions where she and her parents meet with clinicians to explore Charlie’s perspective, experiences and triggers. The family might come to understand that, in addition to autism, Charlie has complex developmental strengths and challenges, anxiety, and some difficulties with adjustment related to stress at home and school. This means Charlie experiences a fight, flight, freeze response that looks like aggression, avoidance or shutting down.

With carefully planned supports at home and school, Charlie’s options can broaden and her distress and avoidance can soften. Outside the clinic room, Charlie and her family can be supported to join an inclusive local community sporting or creative activity. Gradually she can spend more time engaged at home, school and in the community.

Nicole Rinehart, Professor, Child and Adolescent Psychology, Director, Krongold Clinic (Research), Monash University; David Moseley, Senior Research Fellow, Deputy Director (Clinical), Monash Krongold Clinic, Monash University, and Michael Gordon, Associate Professor, Psychiatry, Monash University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

In the aftermath of the tragic Bondi knife attack, Joel Cauchi’s parents have spoken about their son’s long history of mental illness, having been diagnosed with schizophrenia at age 17. They said they were “devastated and horrified” by their son’s actions. “To you he’s a monster,” said his father. “But to me he was a very sick boy.”

Globally, one out of every eight people report a mental illness. In Australia, one in five people experience a mental illness in their lifetime.

Mental illness and distress affects not only the person living with the condition, but family members and communities. As the prevalence of mental health problems grows, the flow-on effect to family members, including caregivers, and the impact on families as a unit, is also rising.

While every family is different, the words of the Cauchis draw attention to how families can experience distress, stress, fear, powerlessness, and still love, despite the challenges and trauma. How can they help a loved one? And who can they turn to for support?

The role of caregivers

Informal caregivers help others within the context of an existing relationship, such as a family member. The care they provide goes beyond the usual expectations or demands of such relationships.

Around 2.7 million Australians provide informal care. For almost a third of these the person’s primary medical diagnosis is psychological or psychiatric.

It has long been acknowledged that those supporting a family member with ongoing mental illness need support themselves.

In the 1980s, interest grew in caregiving dynamics within families of people grappling with mental health issues. Subsequent research recognised chronic health conditions not only affect the quality of life and wellbeing of the people experiencing them, but also impose burdens that reverberate within relationships, caregiving roles, and family dynamics over time.

Past studies have shown families of those diagnosed with chronic mental illness are increasingly forced to manage their own depression, experience elevated levels of emotional stress, negative states of mind and decreased overall mental health.

Conditions such as depression, anxiety disorders, bipolar disorder, and schizophrenia can severely impact daily functioning, relationships, and overall quality of life. Living with mental illness is often accompanied by a myriad of challenges. From stigma and discrimination to difficulty accessing adequate health care and support services. Patients and their families navigate a complex and often isolating journey.

The family is a system

The concept of family health acknowledges the physical and psychological wellbeing of a person is significantly affected by the family.

Amid these challenges, family support emerges as a beacon of hope. Research consistently demonstrates strong familial relationships and support systems play a pivotal role in mitigating the adverse effects of mental illness. Families provide emotional support, practical assistance, and a sense of belonging that are vital for people struggling with mental illness.

My recent research highlights the profound impact of mental illness on family dynamics, emphasising the resilience and endurance shown by participants. Families struggling with mental illness often experience heightened emotional fluctuations, with extreme highs and lows. The enduring nature of family caregiving entails both stress and adaptation over an extended period. Stress associated with caregiving and the demands on personal resources and coping mechanisms builds and builds.

Yet families I’ve interviewed find ways to live “a good life”. They prepare for the peaks and troughs, and show endurance and persistence. They make space for mental illness in their daily lives, describing how it spurs adaptation, acceptance and inner strength within the family unit.

When treating a person with mental illness, health practitioners need to consider the entire family’s needs and engage with family members. By fostering open and early dialogue and providing comprehensive support, health-care professionals can empower families to navigate the complexities of mental illness while fostering resilience and hope for the future. Family members express stories of an inner struggle, isolation and exhaustion.

Shifting the focus

There is a pressing need for a shift in research priorities, from illness-centered perspectives to a strengths-based focus when considering families “managing” mental illness.

There is transformative potential in harnessing strengths to respond to challenges posed by mental illnesses, while also supporting family members.

For people facing mental health challenges, having loved ones who listen without judgement and offer empathy can alleviate feelings of despair. Beyond emotional support, families often serve as crucial caregivers, assisting with daily tasks, medication management and navigating the health-care system.

As the Cauchi family so painfully articulated, providing support for a family member with mental illness is intensely challenging. Research shows caregiver burnout, financial strain and strained relationships are common.

Health-care professionals should prioritise support for family members at an early stage. In Australia, there are various support options available for families living with mental illness. Carer Gateway provides information, support and access to services. Headspace offers mental health services and supports to young people and their families.

Beyond these national services, GPs, nurses, nurse practitioners and local community health centres are key to early conversations. Mental health clinics and hospitals often target family involvement in treatment plans.

While Australia has made strides in recognising the importance of family support, challenges persist. Access to services can vary based on geographic location and demand, leaving some families under-served or facing long wait times. And the level of funding and resources allocated to family-oriented mental health support often does not align with the demand or complexity of need.

In the realm of mental illness, family support serves as a lifeline for people navigating the complexities of their conditions.

If this article has raised issues for you, or if you’re concerned about someone you know, call Lifeline on 13 11 14.

Amanda Cole, Lead, Mental Health, Edith Cowan University

This article is republished from The Conversation under a Creative Commons license. Read the original article.