“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.

Dementia is the second leading cause of death for Australians aged over 65. More than 421,000 Australians currently live with dementia and this figure is expected to almost double in the next 30 years.

There is ongoing public discussion about whether dementia should be a qualifying illness under Australian voluntary assisted dying laws. Voluntary assisted dying is now lawful in all six states, but is not available for a person living with dementia.

The Australian Capital Territory has begun debating its voluntary assisted dying bill in parliament but the government has ruled out access for dementia. Its view is that a person should retain decision-making capacity throughout the process. But the bill includes a requirement to revisit the issue in three years.

The Northern Territory is also considering reform and has invited views on access to voluntary assisted dying for dementia.

Several public figures have also entered the debate. Most recently, former Australian Chief Scientist, Ian Chubb, called for the law to be widened to allow access.

Others argue permitting voluntary assisted dying for dementia would present unacceptable risks to this vulnerable group.

Australian laws exclude access for dementia

Current Australian voluntary assisted dying laws exclude access for people who seek to qualify because they have dementia.

In New South Wales, the law specifically states this.

In the other states, this occurs through a combination of the eligibility criteria: a person whose dementia is so advanced that they are likely to die within the 12 month timeframe would be highly unlikely to retain the necessary decision-making capacity to request voluntary assisted dying.

This does not mean people who have dementia cannot access voluntary assisted dying if they also have a terminal illness. For example, a person who retains decision-making capacity in the early stages of Alzheimer’s disease with terminal cancer may access voluntary assisted dying.

What happens internationally?

Voluntary assisted dying laws in some other countries allow access for people living with dementia.

One mechanism, used in the Netherlands, is through advance directives or advance requests. This means a person can specify in advance the conditions under which they would want to have voluntary assisted dying when they no longer have decision-making capacity. This approach depends on the person’s family identifying when those conditions have been satisfied, generally in consultation with the person’s doctor.

Another approach to accessing voluntary assisted dying is to allow a person with dementia to choose to access it while they still have capacity. This involves regularly assessing capacity so that just before the person is predicted to lose the ability to make a decision about voluntary assisted dying, they can seek assistance to die. In Canada, this has been referred to as the “ten minutes to midnight” approach.

But these approaches have challenges

International experience reveals these approaches have limitations. For advance directives, it can be difficult to specify the conditions for activating the advance directive accurately. It also requires a family member to initiate this with the doctor. Evidence also shows doctors are reluctant to act on advance directives.

Particularly challenging are scenarios where a person with dementia who requested voluntary assisted dying in an advance directive later appears happy and content, or no longer expresses a desire to access voluntary assisted dying.

Allowing access for people with dementia who retain decision-making capacity also has practical problems. Despite regular assessments, a person may lose capacity in between them, meaning they miss the window before midnight to choose voluntary assisted dying. These capacity assessments can also be very complex.

Also, under this approach, a person is required to make such a decision at an early stage in their illness and may lose years of otherwise enjoyable life.

Some also argue that regardless of the approach taken, allowing access to voluntary assisted dying would involve unacceptable risks to a vulnerable group.

More thought is needed before changing our laws

There is public demand to allow access to voluntary assisted dying for dementia in Australia. The mandatory reviews of voluntary assisted dying legislation present an opportunity to consider such reform. These reviews generally happen after three to five years, and in some states they will occur regularly.

The scope of these reviews can vary and sometimes governments may not wish to consider changes to the legislation. But the Queensland review “must include a review of the eligibility criteria”. And the ACT bill requires the review to consider “advanced care planning”.

Both reviews would require consideration of who is able to access voluntary assisted dying, which opens the door for people living with dementia. This is particularly so for the ACT review, as advance care planning means allowing people to request voluntary assisted dying in the future when they have lost capacity.

This is a complex issue, and more thinking is needed about whether this public desire for voluntary assisted dying for dementia should be implemented. And, if so, how the practice could occur safely, and in a way that is acceptable to the health professionals who will be asked to provide it.

This will require a careful review of existing international models and their practical implementation as well as what would be feasible and appropriate in Australia.

Any future law reform should be evidence-based and draw on the views of people living with dementia, their family caregivers, and the health professionals who would be relied on to support these decisions.

Ben White, Professor of End-of-Life Law and Regulation, Australian Centre for Health Law Research, Queensland University of Technology; Casey Haining, Research Fellow, Australian Centre for Health Law Research, Queensland University of Technology; Lindy Willmott, Professor of Law, Australian Centre for Health Law Research, Queensland University of Technology, Queensland University of Technology, and Rachel Feeney, Postdoctoral research fellow, Queensland University of Technology

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