“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.

Around one in six Australians has some form of hearing loss, ranging from mild to complete hearing loss. That figure is expected to grow to one in four by 2050, due in a large part to the country’s ageing population.

Hearing loss affects communication and social engagement and limits educational and employment opportunities. Effective treatment for hearing loss is available in the form of communication training (for example, lipreading and auditory training), hearing aids and other devices.

But the uptake of treatment is low. In Australia, publicly subsidised hearing care is available predominantly only to children, young people and retirement-age people on a pension. Adults of working age are mostly not eligible for hearing health care under the government’s Hearing Services Program.

Our recent study published in the journal Ear and Hearing showed, for the first time, that working-age Australians from lower socioeconomic backgrounds are at much greater risk of hearing loss than those from higher socioeconomic backgrounds.

We believe the lack of socially subsidised hearing care for adults of working age results in poor detection and care for hearing loss among people from disadvantaged backgrounds. This in turn exacerbates social inequalities.

Population data shows hearing inequality

We analysed a large data set called the Household, Income and Labour Dynamics in Australia (HILDA) survey that collects information on various aspects of people’s lives, including health and hearing loss.

Using a HILDA sub-sample of 10,719 working-age Australians, we evaluated whether self-reported hearing loss was more common among people from lower socioeconomic backgrounds than for those from higher socioeconomic backgrounds between 2008 and 2018.

Relying on self-reported hearing data instead of information from hearing tests is one limitation of our paper. However, self-reported hearing tends to underestimate actual rates of hearing impairment, so the hearing loss rates we reported are likely an underestimate.

We also wanted to find out whether people from lower socioeconomic backgrounds were more likely to develop hearing loss in the long run.

We found people in the lowest income groups were more than twice as likely to have hearing loss than those in the highest income groups. Further, hearing loss was 1.5 times as common among people living in the most deprived neighbourhoods than in the most affluent areas.

For people reporting no hearing loss at the beginning of the study, after 11 years of follow up, those from a more deprived socioeconomic background were much more likely to develop hearing loss. For example, a lack of post secondary education was associated with a more than 1.5 times increased risk of developing hearing loss compared to those who achieved a bachelor’s degree or above.

Overall, men were more likely to have hearing loss than women. As seen in the figure below, this gap is largest for people of low socioeconomic status.

Why are disadvantaged groups more likely to experience hearing loss?

There are several possible reasons hearing loss is more common among people from low socioeconomic backgrounds. Noise exposure is one of the biggest risks for hearing loss and people from low socioeconomic backgrounds may be more likely to be exposed to damaging levels of noise in jobs in mining, construction, manufacturing, and agriculture.

Lifestyle factors which may be more prevalent in lower socioeconomic communities such as smoking, unhealthy diet, and a lack of regular exercise are also related to the risk of hearing loss.

Finally, people with lower incomes may face challenges in accessing timely hearing care, alongside competing health needs, which could lead to missed identification of treatable ear disease.

Why does this disparity in hearing loss matter?

We like to think of Australia as an egalitarian society – the land of the fair go. But nearly half of people in Australia with hearing loss are of working age and mostly ineligible for publicly funded hearing services.

Hearing aids with a private hearing care provider cost from around A$1,000 up to more than $4,000 for higher-end devices. Most people need two hearing aids.

Lack of access to affordable hearing care for working-age adults on low incomes comes with an economic as well as a social cost.

Previous economic analysis estimated hearing loss was responsible for financial costs of around $20 billion in 2019–20 in Australia. The largest component of these costs was productivity losses (unemployment, under-employment and Jobseeker social security payment costs) among working-age adults.

Providing affordable hearing care for all Australians

Lack of affordable hearing care for working-age adults from lower socioeconomic backgrounds may significantly exacerbate the impact of hearing loss among deprived communities and worsen social inequalities.

Recently, the federal government has been considering extending publicly subsidised hearing services to lower income working age Australians. We believe reforming the current government Hearing Services Program and expanding eligibility to this group could not only promote a more inclusive, fairer and healthier society but may also yield overall cost savings by reducing lost productivity.

All Australians should have access to affordable hearing care to have sufficient functional hearing to achieve their potential in life. That’s the land of the fair go.

Mohammad Nure Alam, PhD Candidate in Economics, Macquarie University; Kompal Sinha, Associate Professor, Department of Economics, Macquarie University, and Piers Dawes, Professor, School of Health and Rehabilitation Sciences, The University of Queensland

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