Individuals with PWS can have varying degrees of impaired social skills, social cognition and self-awareness. These can cause anxiety, oversensitivity to perceived threats, quickness to anger, and other behaviors that can lead to social isolation, loneliness, and depression. Most people with PWS are social and enjoy spending time with family and friends.

A study of the characteristics of autism spectrum disorders in PWS found that many people with PWS have some degree of impairment in sustaining conversations and in the quality and amount of their reciprocal social interactions. In PWS, the ability to form and maintain social connections is affected by the impact of cognitive and processing limitations upon insight, social perception and social skills. It can be additionally compounded by speech and language difficulties, untypical behaviours and a reduced ability to ‘self-monitor’.

However, most people with PWS want and need social interaction. It is common for children with PWS to gravitate toward adults because they will patiently listen and engage with them. Due to their need to make sense of their world and manage their anxieties, people with PWS can present as egocentric in their interests and views, but when you engage with someone with PWS, you will find that their interests are not usually restricted and topics can be extended. They may need additional support,which can be supplied by teaching and reinforcing social skills, such as not interrupting, listening, turn-taking, reading non-verbal communication and maintaining an acceptable distance. They may also need support to interpret the views, feelings and behaviour of others. It cannot be assumed they will be aware of the expected response in certain situations or understand social appropriateness, so these need to be taught – role play and social stories are useful tools.

Prader-Willi Syndrome Association of New Zealand

Most PWS people I have encountered are quite social. They enjoy talking to strangers and engaging the world in conversation. This is an area in which Clementine diverges from the norm. She is shy and quiet. Clem prefers to observe social interactions rather than participate in them. She is usually very content to entertain herself with activities she enjoys. These activities are things like coloring, using her iPad or phone or playing with her favorite dolls.

Clementine loves school. She enjoys being around her peers. So far Clem has spent her school career in a mixture of both general education classrooms and special education classroom. Her classmates have been typical and also exceptional. Clementine prefers the company of adults over children, most likely because she knows they may be a bit more patient in their interactions with her. However every school year Clem will bond with one other child, always a girl, and always someone who is quiet and similar in temperament. Generally speaking, this friend will also have a healthy dose of “mama” and will enjoy helping Clem in the classroom. Clementine struggles with the idea that you can have more than 1 friend at a time. To her, if she develops a friendship with a second child, then it means that she won’t be able to still be friends with the 1st friend. I’m not sure why she feels this way. We have talked about it quite a lot and so far nothing has been able to dissuade her from this notion.

Clementine has experienced very little mistreatment by her peers. I think we are very fortunate in this regard. I suspect this might change as she proceeds into middle school but I’m hoping for the best. Clem is truly the eternal optimist. She believes that everyone has good intentions and she never says anything unkind about anyone (except for her siblings of course). Clem is capable of properly interpreting others intentions and doesn’t misread social cues too often. Even when faced with unkindness, she is quick to forgive and to forget. We have always complimented her on her large heart and she prides herself on her ability to be “a good friend and make people feel better”.

Most of Clem’s friendships have existed only within the confines of school. She has had some opportunity to have friends over for play dates and go to a few friend’s houses in return. But these situations can be stressful both for her and for her friend. Clem usually tires of playing with someone pretty quickly, mostly because the concentration required to maintain a two sided conversation is considerable. And for the typical child, following Clem’s conversations can be equally taxing because she tends to talk about one subject ad nauseam or she will switch subjects and provide no context clues as to her new topic.

In general I would describe Clem as more of a loner, not because she is rejected by others but by choice. She may very well come by that honestly. I am also someone who truly enjoys my solitude and being able to do “my own thing”. I’m happy about this because it means she doesn’t long for the company of her peers and doesn’t feel the sting of rejection that may accompany more socially minded PWS individuals. Her desire for social interaction may increase as she ages but we will cross that bridge when we come to it.

Clementine is very lucky to have 3 older siblings. They are all very patient with her but also treat her as they would each other. She gets kidded, teased and ignored and she has learned how to stick up for herself and to dish it out in return. Clem has a great sense of humor and a wild imagination. She entertains the whole family with her stories or just her unique take on things. Clem is loved and appreciated and she loves well in return. As her mom, what more could I really ask?

Clementine, Kellen, Jackson and Mackenzie 2019, Marais Poitevin France