Behaviour and Mental Health
All behaviour can be seen as communication. In PWS, the questions, “When do behaviours start?” and “How do I handle challenging behaviours?” are always asked. Communication will often breakdown – between the parent and child, the child and teacher, or friends, or other family members, the options are endless! So how do we try to avoid this breakdown? The main issue arises from heightened anxiety levels, firstly from the person with PWS, and also from the person trying to understand. We need to be able to look at anxiety and all its sub-forms, such as avoidance and non-compliance, denial, perseveration and muddledness, frustration, becoming argumentative or recognising a drop in communication levels, compulsive behaviours , all of these which can lead to a “blowout” or “meltdown” situation. Let’s explore some of the issues.
Behaviour as a form of communication
If we try to look at behaviour as a form of communication – that the person is trying to tell us something that they might not have the verbal ability or comprehension to do so, then we can separate the behaviour from the person and look at what they are trying to say. All behaviour is a form of communication – it’s how we perceive and interpret that behaviour that will lead to success or failure. It’s a bit like learning another language. We all perceive differently, therefore we communicate differently.
When do behaviours start?
So-called challenging behaviours are not usually around during the first few years of life. Teenage and young adult years are when we generally see the more challenging behaviours. As the person ages into their 30s and older, they are generally less challenging, but can have more medical challenges.
Why do we call behaviour challenging?
Perhaps it’s because we (as parents, or caregivers, siblings, grandparents – anyone, in fact, who is involved with the care of a person with PWS, no matter what the age) find these behaviours as out of the ordinary – they’re not ‘normal’, they can be embarrassing, we don’t understand them, they can be scary and even dangerous and can quickly escalate to a total outburst and meltdown before you can turn around.
Behaviours can quickly escalate from nothing out-of-the-ordinary to verbal outbursts and abuse, physical abuse, crying fits or hissy fits, violence, self-mutilation and trashing.
It can be very scary.
There is a goal for success – it’s simple: we need to gain the trust, respect, and bonding of the person in order to reach success. (in fact, that’s true for any relationship!)
“Challenging communication” has been described as ‘the emergence of disruptive or destructive behaviours is often the person’s way of communicating with an incomprehensible and non-responsive world’ (Donellon, Mirenda, Mesaros & Fassbender, p.18.1985)
So, it is learning to interpret the behaviour, as a communication, that is the key. The thing is, we interpret everyone’s behaviour according to our own perceptions – whether we like, or dislike a person, what we judge them on, and how they measure up, etc. Well, guess what? People with PWS will also interpret everyone’s behaviour, but according, of course, to their own perceptions. And we know that people with PWS have very concrete perceptions! We know that they make up their minds regardless of whether they are right or wrong, we know that they like hierarchy, and we know that once they’ve interpreted your communication, they will also have judged you, too.
We interpret behaviour by our own social codes; we know how to monitor our behaviours, how to hid our feelings, how to be polite, we understand how to reason, to make allowances, to compromise, to forgive. People with PWS will not have the same social code as you, and their behaviours are often described as manipulative.
I would ask you to think about this word “manipulative”. It means, getting what we want , usually by unfair or insidious ways and means. But we have learned several things about the syndrome and how it affects people: We know a person with PWS is very ego-centered, with little ability to “self monitor”. We know that their world becomes ‘themselves’, we know that most behaviours can be traced back to the hows and whys of food-sourcing. We also know that PWS is a ‘starvation syndrome’ and survival for a person means eating.
So – are the behaviours manipulative, or are they just a way of surviving in a world that is contrary and often scary? If we perceive PWS behaviours as manipulative, then the way we work with them, support them, and respond to them, will be skewed to our perception of being manipulated.
Communication breakdown
People with PWS like concrete outcomes, they like visual interpretations – something they can see will happen a certain way: a staff member (or teacher) will be there at a certain time, on a certain day, and they will be doing certain things. People with PWS are not good at guesswork, so, if you can, try to make your communications visual, and concrete, so their expectations are not put at variance.
Most “PWS behaviours” that result in a loss of self-control (be it verbal or physical) will have come from a communication breakdown and will have been exacerbated by anxiety. Anxiety, therefore, is the biggest precursor (or clue) to what might happen next. It is the best warning we will get, so learn to recognise what makes your person with PWS, anxious. It can be over little things: when is it going to happen, who will be there, what is expected of me, I can’t do this, I don’t understand… or it can be over bigger things: “will I get caught? why can’t I have more? I hate you – I’m leaving.”
Anxiety
We all know what it feels like to be anxious, frustrated, annoyed, or stressed. We know how easy it is for our anxiety levels to rise and for our behaviours to become abrupt, curt, even angry to the point of losing our tempers, saying the wrong thing and often making situations worse. Anxiety, if not controlled, will lead to an escalation in behaviour.
It’s just the same, if not more, for people with PWS. Anxiety for them is the inability to control an already difficult world. We know that they are very ego-centric, that the world revolves around them, so think how easily things can get out of control for them.
Lots of behaviours will increase in intensity and many of these will be easily recognisable:
- Avoidance or non-compliance
- Denial
- Perseveration, muddledness
- Frustration
- Argumentative
- Drop in communication levels
- Compulsive behaviours
If you see a rise in any of these behaviours, you will know that somewhere along the line there’s been a communication breakdown. It’s time to wind back the clock and find out what’s gone wrong.
You can use a variety of strategies:
Avoidance/non-compliance: Give options, and offer to help with the task, or offer alternative solutions and be creative. Check that the task is understood, check the level of abilities around that task, break the task into manageable parts.
Denial: Denial is often used as self-defence (it wasn’t me, I didn’t do it!) and, quite frankly, there’s no point in accusation unless you’ve caught the person red-handed; just note your suspicions and pass the information on (“I think there was a $10 note taken from my car – please keep a check on any new purchases…”). Don’t use open or closed questions and expect an accurate answer – it won’t happen. You may choose to ignore the situation rather than engage in argument.
Perseveration/muddledness: Take time to answer fully and check to make sure the person has understood you – get them to tell you what is required of them. Break the task into manageable components. Redirect to one task at a time. Use visual aids if necessary. Put a time limit on questioning. Make sure you have not given the person too many choices – that is a sure way to raise anxiety.
Frustration: Take time to backtrack. Ask simple closed questions (where a yes or no answer will help you quickly understand). Make sure your communication has been understood. Provide good, logical details and reasons and make sure of your facts. People with PWS appreciate being told the full facts rather than a “just because” answer.
Argumentative: You won’t win an argument, so don’t answer back, no matter how tempting it might be. Take a break, especially if the person is becoming vocal and abusive. Ask if they’d like some time to be on their own. Try to diffuse the situation by asking questions like “tell me what happened so we can try to sort it out”. Try to reach a solution or compromise and if necessary, bring in a third person to listen.
Sometimes arguments come completely from left-field, especially when engaged in denial, and then, suddenly, the person with PWS has made themselves the victim and is accusing everyone of not understanding them, of being unfair, and misunderstood. Somehow, when it is perfectly obvious to everyone else that the person with PWS is in the wrong, they have neatly turned the tables on you, and you’re the ‘bad guy’. This just goes to prove that a concrete outcome has not yet been reached. It’s better to leave things for a while, rather than engage in further argument.
Sometimes you can negotiate a catch phrase that the person feels comfortable with (“this is going nowhere, lets both back down a bit”, or “can you find a way to resolve this for me?”). This is a good way of empowering the person to find a way to reach a compromise.
Drop in Communication Levels: This is not a common thing, most people preferring to raise the level of communication! However, when it does happen, you will notice the person seeming to withdraw into themselves, maybe start crying. Take a short break, give the person time to collect themselves. Then give them something important to do – a task they might enjoy. Don’t insist if they don’t want to, but leave the option open.
Compulsive Behaviours: This is sometimes linked with autistic-like behaviours (read more on this) and can present as possessiveness, absolute insistence, accumulation of possessions, repetitive behaviours, may seem irrational. A task that might appear simple, becomes extremely time-consuming and can only be done their way. This might often happen just as you’re leaving the house, about to do something, etc. Reasoning might not be possible and sometimes a person needs to learn from their mistakes and if they miss out on an outing, so be it. But make sure you have Plan B!
Blow-outs and Meltdowns: These happen. No matter how well prepared you think you are, how well you think you have your strategies planned, meltdowns and blow-outs happen. You might have missed a precursor, or trigger, missed noticing a communication breakdown, and by the time you’ve realised it, it’s way too late.
During a meltdown, make sure the person is safe, does not have access to sharp tools, breakable objects and so on. Make sure everyone else (including you) is safe. You will have to wait this one through – it will burn out, given time. During the recovery phase, you have only one duty – make sure you do not re-ignite the situation! Stay quiet, give the person space, play quiet music, carry on as though everything were normal. It can be hard to do, but it is the best way to bring a person out of a meltdown. And, please, don’t forget – this is the syndrome working here.
When everything has calmed down – maybe the person with PWS has had a sleep – you will probably find they will apologise for their behaviour. Nearly every person with PWS I have ever met (and there have been many!) apologises and asks forgiveness. Accept the apology quietly. Now is the time to ask if they want to talk about it – if the answer is no, do not persist.
Summary
- Parents – it is not your fault. Nothing you did before or during pregnancy caused PWS. It happens randomly and can happen to anyone.
- Understanding the person and understanding the syndrome are two different things; your child comes first.
- PWS characteristics are the same around the world and they can be managed.
- When things go wrong, you may hate the syndrome, but do not hate the child. They cannot help it.
- Anxiety is the biggest threat to them. It is the precursor to so much more.
- Anxiety comes in different forms – learn to recognise them and how to avoid escalation.
More pages
Promoting Positive
Behaviour
Confabulation
Coping with change
Managing a meltdown
Setting boundaries
A guide to rituals
and obsessions
Motivating someone with PWS
Skin picking
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Paediatric Association of Nigeria - 57th Annual Scientific Conference
IPWSO was proud to support a dedicated PWS symposium at the 57th Annual Scientific Conference of the Paediatric Association of Nigeria (PAN) Conference held 21-23 January 2026 in Ogun State.
Famcare Board Member, Dr Elizabeth Oyenusi, presented on the clinical features, diagnosis, and management of PWS, while Dr Oluwakemi Ashubu shared the first genetically confirmed case of PWS in the country - an important milestone. The session attracted over 104 delegates and sparked a lively discussion.
IPWSO also hosted an exhbition table throughout the 3-day conference, distributing educational materials and engaging directly with healthcare professionals.
We are hugely grateful to Dr Oyenusi, Dr Ashubu and Dr Oladipo (Senior Registrar) for their support in making this educational oureach possible - helping to strengthen awareness and improve early diagnosis of PWS in Nigeria. Funding for this event was kindly provided by Friends of IPWSO (USA).
Global Newborn Society Inaugural Conference, Sweden
The Global Newborn Society’s 1st Conference took place in Uppsala and Stockholm, Sweden, from 2-4 November 2025, marking an exciting milestone for the organisation’s international community.
We were delighted that Dr Susanne Blichfeldt was invited to deliver a plenary lecture on behalf of IPWSO, titled “Neonatal Hypotonia: Clinical Features Seen in PWS That Can Help Differentiate It from Other Congenital Disorders with Similar Symptoms.”
The inaugural event brought together a diverse audience of physicians, nurses, and social care leaders from around the world. The programme was wide-ranging and stimulating, featuring cutting-edge discussions on newborn health, early diagnosis, and innovative care practices - setting a strong foundation for future collaboration within this growing global network.
ASPED 2025, Dubai, UAE
The 6th conference of the Arab Society for Paediatric Endocrinology and Diabetes was held in Dubai over two days on the 26th and 27th September 2025. IPWSO was invited to be a partner and to present at a session on PWS. The conference was attended by over 400 paediatric endocrinologists from more than 20 countries in the Middle East and North Africa. Charlotte Hoybye and Tony Holland attended and presented on behalf of IPWSO and Dr Sarah Ehtisham described her experience seeing patients with PWS in the United Arab Emirates. IPWSO hosted a stand for the whole conference.
In conversation many attendees reported seeing people with PWS and described the challenges they faced, particularly with the management of behaviour problems. Some felt nervous about starting growth hormone as they had had no experience prescribing it to infants with PWS.
Approximately 100 attendees joined the IPWSO mailing list and attendees were very keen to gain knowledge about PWS. Numerous memory sticks with information on PWS and printed material in English and Arabic were taken. Some attendees talked about establishing national or regional PWS Associations.
This was an extremely positive experience and hopefully attending this meeting has laid the groundwork for IPWSO to engage more fully in the Region in the future. We were very well looked after, and the organisers were excellent hosts.
EPNS 2025, Munich, Germany
Together with parents and representatives from the Prader-Willi-Syndrom Vereinigung Deutschland, we were proud to host a PWS exhibition stand at the 16th Congress of the European Paediatric Neurology Society, held in Munich from 8-14 July 2025. The event welcomed over 2,000 medical professionals from around the world.
We had the pleasure of engaging with attendees from Türkiye, Iraq, Palestine, Croatia, Moldova, the Philippines, Ukraine, North Macedonia, Kazakhstan, Armenia, and many local specialists.
Dr. Stefani Didt, Gesellschafter at Katholische Jugendfürsorge der Diözese Augsburg, kindly supported us at the stand and provided expert responses to clinical enquiries. We hope these international connections will contribute to raising awareness about IPWSO’s work, particularly in improving access to genetic testing in underserved regions.
We also highlighted the new treatment for hyperphagia and shared our recent publication, "Improving Mental Health and Well-being for People with PWS."
Sincere thanks to our colleagues from PWS Vereinigung Deutschland and to Dr. Didt for their invaluable support.
ESPE-ESE 2025, Copenhagen, Denmark
IPWSO was honoured to participate in the recent Joint Congress of the European Society for Paediatric Endocrinology (ESPE) and the European Society of Endocrinology (ESE), held in Copenhagen from 10–13 May 2025. This important event provided an invaluable opportunity to raise awareness of Prader-Willi syndrome (PWS) among a broad international medical audience.
IPWSO was represented by our CEO, Margaret Walker, along with Dr Charlotte Höybye from Sweden and Dr. Susanne Blichfeldt from Denmark—both esteemed members of IPWSO’s Clinical and Scientific Advisory Board.
Dr Blichfeldt noted that this congress is a major event in the clinical academic calendar and has a particular significance as it marks the first-ever joint meeting of these two prominent societies. Despite its European designation, the congress attracted participants from around the globe, including delegates from the Middle East, Africa, the United States, Japan, Australia, and New Zealand.
IPWSO’s educational booth was strategically positioned within the Patient Advisory Group area dedicated to rare disease organisations. As part of the programme, we were invited to deliver a 30-minute presentation during the Patient Voices Session. Dr Charlotte Höybye and Dr Susanne Blichfeldt presented on Prader-Willi syndrome (PWS), with a focus on genetics, endocrinology, and clinical manifestations. Our presentation, along with many others, was recorded and is now available on demand via the ESPE-ESE congress platform.
PWS was prominently featured throughout the congress. In a session on the transition of care for patients with rare diseases, Dr. Maithé Tauber (Toulouse, France) discussed the specific challenges associated with the transition period in PWS. She emphasized the need for multidisciplinary care and ongoing specialist follow-up in adulthood through dedicated PWS clinics.
Another session addressed medical and clinical management in both children and adults with PWS, again highlighting the critical importance of a smooth transition from paediatric to adult care and the role of specialised clinics. The session included an in-depth discussion on hyperphagia in PWS, exploring its profound impact on individuals and their families. Management strategies were reviewed, and a new medication, Vykat, was presented as a potential treatment for hyperphagia.
In addition, there was a strong presence of scientific posters on PWS from various countries, covering a wide range of topics such as hormonal therapies, genetic findings, ageing, and guidance for families. A total of 33 posters focused on PWS, reflecting a growing global interest and commitment to advancing knowledge and care in this area.
We were greatly encouraged by the high level of engagement and the visibility given to PWS throughout the congress. This increased awareness brings hope that more children will be diagnosed earlier and receive appropriate, specialised medical care from childhood through to adulthood.
ASPAE 2025, Abidjan, Côte d’Ivoire
After Yaounde (Cameroon 2023) and Alger (Algeria 2024), IPWSO was pleased to be present at the 16th Annual Congress of the African Society of Paediatric and Adolescent Endocrinology (ASPAE), at the invitation of Dr Kouamé Hervé Miconda, Programme Co-organiser. Prior to the main conference, IPWSO, in partnership with Dr Micondo, organised a dedicated PWS workshop which attracted 60 professionals - paediatricians, endocrinologists, doctors, students, nurses, and midwives.
MENA 2025 Abu Dhabi, UAE
The Middle East and North African (MENA) conference for Rare Diseases was held in Abu Dhabi, United Arab Emirates, between 17th and 20th April 2025. Tony Holland represented IPWSO at this meeting and presented a poster about our work. The conference was attended by clinicians, genetic councillors, scientists, and other health disciplines from across North Africa and the Middle East. The conference was in English as many clinicians in this part of the world are from elsewhere and not Arabic speakers. The conference was of a very high standard and ranged broadly across many rare genetically determined conditions as well as there also being discussions about how to develop services and how to seek approval for new treatments. Our poster was one of five that was selected as the best posters exhibited at the meeting. Tony said, "My experience of the conference was very positive and I am sure there are opportunities that can be built on. Being part of the endocrinology meeting, which is likely to be attended by endocrinologists from across the whole region, provides a wonderful opportunity to engage more fully with clinicians most likely to see people with PWS".
Kenya Paediatric Association Annual Scientific Conference, Monbassa, Kenya
Dr Menbere Kahssay and Dr Renson Mukhwana, Aga Khan University Hospital, Nairobi represented the Kenyan team and, together with Drs Constanze Laemmer and Dr Charlotte Höybye, managed the IPWSO educational booth at our first meeting in this region.
A dedicated session on PWS significantly raised awareness and knowledge about the syndrome among paediatricians and allied health professionals.
Dr Kahssay said, "We were able to have track and plenary session and four days interaction with the participants at the booth.
The PWS session focused on case experiences and regional differences in PWS management. Thanks to IPWSO’s support, Drs Charlotte Hoybye and Constanze Lammer joined as expert speakers, sharing their valuable experiences in managing PWS across the neonatal, childhood, and adult stages".
Dr Menbere Kahssay and Dr Renson Mukhwana presented genetically confirmed local cases, highlighting diagnostic challenges and treatment approaches.
Third Biennial Rare Diseases Conference, Rare X, Johannesburg, South Africa
Karin Clarke and Molelekeng Sethuntsa organised the IPWSO exhibition table at this event in Johannesburg from 14-17 February 2024. Molelekeng attended the conference and reported on the excellent discussions that focused on the challenges of early diagnosis, especially in Africa, centres of excellence, and ways that the Department of Health, WHO and RDI can improve detection and treatment of rare diseases.
6th RARE Summit 2023, Cambridge, UK
Tony Holland, President, and Agnes Hoctor, Communications and Membership Manager, represented IPWSO at the 6th RARE Summit organised by Cambridge Rare Disease Network on 12 October, 2023.
MetaECHO® 2023, Global Conference, Albuquerque, New Mexico
The 5th MetaECHO® Global Conference took place from September 18-21 in Albuquerque, New Mexico. It celebrated 20 years of ECHO programmes and brought together ECHO leaders, partner teams, government officials, funders, policy makers, and industry experts to share retrospective work and thoughts on the future of ECHO. Our President, Tony Holland, presented a paper on “A Global ECHO Programme for the Rare Disorder – PWS", based on IPWSO’s Project ECHO programme.
EPNS 2023, Prague, Czech Republic
The 15th European Paediatric Neurology Society Congress (EPNS) took place from 20-24 June. Tünde Liplin, PWS Hungary, and Hana Verichová, PWS Czechia, represented IPWSO. Twenty-two people from countries including Georgia, Israel, Lithuania, Turkey, Italy, Slovakia, Romania, Netherlands, Bosnia Herzegovina, Belgium, Argentina, Norway, Serbia, India, and Australia subscribed to the "Stay in touch with IPWSO!" contact list. Tünde reported that many people came to the stand just to inquire and chat, the majority of whom were hearing about IPWSO and our work for the first time.
ECE 2023, Istanbul, Turkey
The European Congress of Endocrinology (ECE) took place from 13-16 May. We hosted an information table and were represented by IPWSO advisers, Constanze Lämmer and Charlotte Höybye, and also our Communications and Membership Manager, Agnes Hoctor. We were pleased to be given the opportunity to present on IPWSO and PWS at the Hub Session. The most exciting and important element for us was that the Turkish location meant that delegates came from many countries in Middle East as well as Europe.
ASPAE 2023, Yaoundé, Cameroon
We hosted an educational booth and presented at the round table on Obesity at this important Endocrinology conference hosted by the African Society of Paediatric and Adolescent Endocrinology (ASPAE) from 9-10 February. Read our blog about our visit.
ECE 2021, Online
We hosted an educational booth and gave a presentation at the European Congress of Endocrinology in May 2021.
ESPE 2019, Vienna, Austria
We exhibited at the European Society of Paediatric Endocrinology (ESPE) Conference in Vienna, Austria, which took place in September 2019. Find out more in our blog.
ECE 2019, Lyon, France
We exhibited at the European Congress of Endocrinology in May 2019.
Dr Ashubu discussing IPWSO's educational materials with delegates at our booth.
IPWSO was honoured to be invited to present at the Global Newborn Society's Inaugural Conference.
Dr Sarah Ehtisham presenting at ASPED 2025 followed by a panel discussion.
Colleagues from PWS Vereinigung Deutschland help manage our PWS stand at EPNS 2025. Many thanks to all the parents and carers for their invaluable support!
Dr Charlotte Höybye (Sweden) and Dr. Susanne Blichfeldt (Denmark) presenting at the ESPE-ESE Patient Voices Session - May 2025
Dr Blichfeldt and Margaret Walker (CEO) managing our IPWSO educational booth.
François Besnier, IPWSO's Vice President, meeting some of our travel fellowship delegates at ASPAE 2025.
IPWSO's poster achieves top award!
Many thanks to Drs Constanze Laemmer, Menbere Kahssay, Charlotte Höybye and Renson Mukwana for all their support at KPA 2025.
What is PWS?
Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome and it affects all races and both sexes equally.
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If you suspect your patient has Prader-Willi syndrome, based on the clinical signs and symptoms, but are unable to access testing in your country, then you may be able to access free testing.
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