Disability Awareness Hub: Autism in Boys and Men: What We Might Miss

June 12, 2026

Understanding the challenges, strengths, and support needs of people living with PWS


Prader–Willi Syndrome (PWS) is a rare, complex genetic condition that affects many areas of a person’s life, including physical health, development, behaviour, and emotional wellbeing. While it’s often associated with eating and weight, PWS is much more than this, and understanding the whole picture is key to supporting individuals and their families well. 


PWS occurs when specific genes on chromosome 15 do not function as they should. This happens very early in development and is usually completely out of anyone’s control. It is not caused by anything a parent did or didn’t do, and in most cases it is not inherited. 


Although PWS is considered rare, families living with it are navigating its impacts every day. The condition is lifelong, and support needs often change as the person grows. 


Early signs and development 


Many children with PWS are identified in infancy. Babies often have very low muscle tone, which can make them appear “floppy.” Feeding can be difficult at first, with poor sucking and slow weight gain. Some babies may need extra feeding support during this stage. 


As children grow, the presentation of PWS changes. Muscle tone usually improves, but new challenges emerge. One of the most well‑known features of PWS is hyperphagia, a persistent and overwhelming sense of hunger that develops in early childhood. People with PWS do not experience fullness in the same way others do, which means food can become a constant focus without careful management. 

Alongside this, children may experience developmental delays, learning differences, short stature, and delayed puberty. Behavioural and emotional regulation can also be challenging, particularly during times of change, stress, or unmet expectations. 


Behavioural and emotional considerations 


People with PWS often thrive on routine, predictability, and clear boundaries. When these supports are in place, many individuals do very well. When they aren’t, anxiety, distress, or challenging behaviours can increase. 


Some common behavioural features include: 

  • Strong need for routine and consistency 
  • Difficulty coping with change or uncertainty 
  • Emotional outbursts linked to anxiety or frustration 
  • Repetitive or compulsive behaviours, such as skin picking 


These behaviours are not about “choice” or poor parenting. They are closely linked to how the brain processes information, stress, and impulse control in PWS. 


Health considerations 


Because of differences in metabolism, muscle mass, and hunger regulation, people with PWS are at higher risk of obesity and related health conditions if food access is not carefully managed. This can include diabetes, sleep apnoea, and cardiovascular issues. 

Hormonal differences are also common and may affect growth, bone health, puberty, and energy levels. Many individuals benefit from ongoing medical monitoring and treatment, including growth hormone therapy, which can support muscle tone, strength, and overall health. 


Support across the lifespan 


There is no cure for Prader–Willi Syndrome, but early, consistent, and coordinated support makes a significant difference. 


Support often includes: 

  • Clear structure around meals and food access 
  • Allied health supports such as speech therapy, occupational therapy, and physiotherapy 
  • Behaviour support that focuses on predictability, emotional regulation, and skill‑building 
  • Medical care from paediatricians, endocrinologists, and other specialists 
  • Strong collaboration with families, schools, and support workers 


As individuals move into adolescence and adulthood, planning for independence, supported living, employment, and community participation becomes especially important. 


Families and the invisible work 


Families supporting someone with PWS often carry a significant, ongoing load. Managing food environments, advocating for understanding in schools and services, navigating systems like the NDIS, and planning for the future requires constant attention and emotional energy. 


This work is often invisible to others, but it is essential. Families are experts in their child, and their knowledge and insight should always be valued and respected. 


Prader–Willi Syndrome and the NDIS 


In Australia, PWS is recognised as a lifelong condition under the NDIS. Many individuals require ongoing supports related to daily living, behaviour support, therapies, and community participation. 


Because PWS is rare and sometimes misunderstood, families may find themselves needing to explain the condition and its risks repeatedly. Strong, informed advocacy and clear documentation are often key to securing appropriate and responsive supports. 


Why awareness matters 


Greater awareness of Prader–Willi Syndrome helps reduce stigma, improves understanding, and leads to better outcomes. When professionals, communities, and systems understand that PWS is a complex neurological and genetic condition — not simply an issue of eating — support becomes more compassionate, effective, and sustainable. 


With the right structure, understanding, and support, people with PWS can live meaningful, connected lives, and families can feel less alone in the journey. 


 

 

 


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Disability Awareness Hub: Understanding Younger Onset Dementia

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Like older onset dementia, it can result from various conditions, including Alzheimer's disease, vascular dementia, frontotemporal dementia, Lewy body dementia, and other neurological disorders. Interestingly, memory loss is not always the first sign. Depending on the type of dementia, changes in personality, behaviour, decision-making, communication, emotional regulation, or problem-solving skills may appear before noticeable memory difficulties. This can make obtaining an accurate diagnosis more complex, as symptoms are sometimes mistaken for stress, depression, burnout, or other mental health concerns. Fascinating Facts About Younger Onset Dementia Dementia Is Not a Normal Part of Ageing One of the most common misconceptions about dementia is that it is an inevitable part of getting older. In reality, dementia is caused by diseases affecting the brain and can occur at almost any age. Symptoms Vary Significantly Between Individuals No two experiences of dementia are exactly the same. Some people may experience significant communication difficulties, while others may demonstrate changes in judgement, behaviour, social awareness, or emotional control. The person's age, lifestyle, diagnosis, support network, and overall health all influence how dementia presents. Early Signs May Be Behavioural Rather Than Cognitive For some individuals, particularly those with frontotemporal dementia, noticeable changes in behaviour or personality may occur before memory impairment becomes apparent. Family members often report that their loved one "just isn't themselves anymore" long before dementia is suspected. People Can Continue Living Meaningful Lives A diagnosis of younger onset dementia does not mean a person immediately loses their independence or quality of life. Many individuals continue participating in hobbies, employment, social activities, community events, and meaningful relationships for years following diagnosis when appropriate supports are in place. Understanding Behaviours of Concern As dementia affects different areas of the brain, individuals may experience difficulties interpreting information, communicating needs, regulating emotions, or responding to environmental demands. Behaviours of concern often emerge when a person is attempting to communicate an unmet need, discomfort, confusion, fear, or frustration. Rather than viewing these behaviours as deliberate or challenging, it is often more helpful to ask: "What is this person trying to tell us?" Agitation and Restlessness Agitation may present as pacing, fidgeting, repeatedly moving around an environment, or appearing unsettled. These behaviours may be linked to pain, anxiety, fatigue, boredom, sensory overload, or changes in routine. Verbal Aggression Some individuals may yell, swear, accuse others, or become argumentative. Often, these responses occur when the person is confused, frightened, unable to express themselves effectively, or feeling misunderstood. Physical Aggression Physical aggression, such as hitting, pushing, kicking, or throwing objects, is frequently associated with a perception of threat or loss of control. The individual may be attempting to protect themselves from something they do not understand or are unable to process. Repetitive Questions and Behaviours Repeating questions or actions can be frustrating for caregivers, but these behaviours often reflect memory difficulties, anxiety, or a desire for reassurance. The behaviour may help the individual feel safe and oriented in their environment. Withdrawal and Loss of Motivation Not all behaviours of concern are outwardly disruptive. Some people become increasingly withdrawn, lose interest in activities they once enjoyed, or disengage from social interactions. This can be related to changes in cognition, mood, confidence, or communication abilities. Wandering and Exit-Seeking A person may attempt to leave a home, workplace, or support setting because they are searching for familiarity, purpose, routine, or a place they associate with safety. These behaviours often reflect unmet emotional or environmental needs rather than intentional non-compliance. How Positive Behaviour Support Can Help Positive Behaviour Support (PBS) offers a person-centred framework for understanding and responding to behaviours of concern in individuals living with younger onset dementia. Rather than focusing on eliminating behaviours, PBS seeks to understand the function of the behaviour and improve the person's quality of life. Understanding the Reason Behind the Behaviour Behaviour support practitioners work collaboratively with the individual, family members, healthcare professionals, and support workers to identify factors contributing to distress. This includes examining: Environmental triggers Communication difficulties Physical health concerns Pain and discomfort Sensory sensitivities Changes in routine Social and emotional factors Understanding these influences allows support teams to develop proactive strategies that reduce distress before behaviours escalate. Improving Communication As dementia progresses, communication can become increasingly difficult. Positive Behaviour Support can assist by introducing strategies such as: Using clear and simple language Allowing additional processing time Reducing competing distractions Using visual supports and prompts Maintaining consistent communication approaches across support networks When communication improves, frustration and distress often decrease. 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Behaviour support practitioners provide education, coaching, and practical strategies that help supporters respond consistently, confidently, and compassionately while preserving the dignity and rights of the person living with dementia. Looking Beyond the Behaviour Perhaps the most important principle when supporting someone with younger onset dementia is recognising that behaviour is a form of communication. By moving beyond the behaviour itself and exploring the person's experiences, emotions, and unmet needs, we create opportunities for connection, understanding, and meaningful support. Positive Behaviour Support provides a framework for achieving this by focusing on the individual rather than the diagnosis. With the right supports, people living with younger onset dementia can continue to enjoy fulfilling lives, maintain important relationships, and participate in the activities that matter most to them. Supporting someone living with dementia means looking beyond their diagnosis or behaviour to understand their identity, experiences, relationships and unmet needs. In our article, Dementia Care: The Whole Person Is the Whole Point , we explore how a wellbeing-led approach can help us respond to distress with greater curiosity, compassion and respect. If you or someone you support is living with younger onset dementia and could benefit from person-centred Positive Behaviour Support, our team is here to help. Get in touch with helpz to discuss how we can support the person, their family and care team. 

Everyone Deserves to Belong

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