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Improving Social Skills In PWS: Elizabeth Roof [VIDEO]

This blog contains excerpts and a video from Improving Social Skills In PWS, a presentation given by Elizabeth Roof at the FPWR 2017 conference.

This blog contains excerpts from Improving Social Skills In PWS, a presentation given by Elizabeth Roof at the FPWR 2017 conference. Her presentation of just over an hour covered two main topics: the behavioral phenotype of PWS and an online social skills group that’s been funded by FPWR. You can watch the full presentation by clicking on the embedded video below.

In case you don't have time to watch the full video, we've captured some of the key points in the notes below.

Elizabeth Roof, a senior research specialist from the Vanderbilt Kennedy Center, specializes in psychiatric and behavioral development in people with developmental delays.

What Do We Know About Social Skills in PWS?

Some general observations - many people with PWS:

Dispelling myths and misconceptions about PWS and social skills

  • Not everyone with PWS has autism: only 12 percent of sample group has autism
  • They’re interested in more than just food – they’re also interested in people
  • There are people with PWS who are living independent lives, including: working, attending college, having friendships, going to parties & sleepovers, participating in Special Olympics and sports

Key takeaway: Find ways to normalize social interactions and resist the urge as parents to isolate kids to protect them.

PWS in autism looks different:

  • More common in people with UPD
  • Poor social, communication skills
  • Restricted interests
  • Rigidity
  • Repetitive behaviors
  • Eye contact
  • Lack of empathy
  • Difficulty reading social cues

How common is autism?

  • Depends on how you measure it
  • Checklists give a lot of false positives
  • Even ADOS gives high false positive rate
  • Need good background, experienced clinician to watch tapes
  • Makes it harder to gain social skills

Ways to measure social skills

  • Parent interview
  • Questionnaires
  • Interactive tasks that are unstructured
  • Standardized measures
  • Real environments
  • ERPs

Can Social Skills Be Taught? Yes! 

Best Way – Environment with Cameras and Helpers

  • Social tasks for groups of kids are set up in a semi-controlled environment
  • Hidden cameras are used to capture quality of social skills: whether kids are looking people in the face, interacting appropriately, etc.
  • Ways to standardize the interaction
  • Can generalize to other settings

Groups are a great way to practice and build relationships 

  • Church groups, sports, boy scouts, girl scouts, best buddies, music camp, volunteering
  • Figure out what talent or interest your kid has and find a way to make a group
  • Create opportunities to learn and build social skills
  • Peer modeling for older and younger kids

Key takeaway: Being busy and engaged makes a huge difference for psychiatric risk factors.

Adults with PWS are part of a family and community

  • Everyone is different – it doesn’t help to compare your kid to other people
  • There is tremendous variety and variability in PWS
  • One size doesn’t fit all

Take strengths and turn them into skills

  • Individual interests can be a good starting point
  • Need to focus on the right things, i.e, people’s faces, their tone of voice, body language.
  • Practice appropriate responses
  • Break down tasks into small parts

Other topics:

  • Nurturing and caring strength in PWS
  • Use of animals to build social skills
  • BOSS (Building Our Social Skills) Study: uses virtual reality social groups 
  • Sampling of how to identify emotions and cause-and-effect
  • Handling conflicts
  • Ways to connect and combat loneliness

Preliminary Results from BOSS

Building Our Social Skills (BOSS) group preliminary results include:

  • 28 subjects have completed study so far
  • Requires computer and a webcam
  • 5 groups currently running with 27 enrolled
  • Parents note changes in social initiation
  • Problem solving is improving
  • Biggest changes are in those with the lowest social skills
  • Can involve people from anywhere

Changes made to the study:

  • Larger age range
  • Booster sessions
  • Other people can be trained to teach the curriculum
  • Parent manual
  • Need to find ways to keep people connected 

Key takeaway: Everybody needs a friend.

Questions & comments from the audience:

  • Parent realized their son needs balance between relationships with typical kids and special needs peers
  • Ideas for how to foster social skills in kids younger than 5? Have them interact with other kids as much as possible in activities that involve sharing, cooperating, interacting, and perhaps do role-playing with parents
  • Suggestions for working with a non-verbal child: Work on non-verbal sharing communication, simple signs
  • Work on pre-emptively setting up social situations with kids, almost like a script for initiation lines; don’t always intervene – help but don’t help all the time 

Understanding PWS - Slide Deck

Topics: Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.