With May marking Prader-Willi Syndrome (PWS) Awareness Month, following on from World Autism Awareness in April, 28-year-old Kelly and her support team share some of the challenges of her dual diagnosis of autism and PWS – and the inspiring story of her achievements.
In 2018 Kelly came to Parvale House in Kettering which, in the main, supports people with the rare genetic condition PWS, characterised by an insatiable appetite. It is one of 12 specialist services in Northamptonshire managed by Consensus Gretton, which has supported adults with PWS for the past 40 years.
Deputy Manager Rhiannon Price recalls: “Kelly had been really unhappy in her previous placement. When she arrived here, she was very intense and had repetitive behaviours as well as frequent outbursts, times when she was hurting herself or damaging property, or leaving the service and going off on her own.”
At that time, the staff team at Parvale House were finding Kelly’s behaviours so difficult that they involved specialists from the Positive Behaviour Intervention Team at Consensus. Behaviour Practitioner Angela Bliss explains:
“Parvale’s team are experienced in supporting individuals with a diagnosis of PWS and their support needs, but not supporting individuals with a dual diagnosis that includes autism. Through working alongside the team and Kelly, we implemented pro-active strategies and introduced these to the team through individualised workshops. So staff gained greater knowledge and understanding of autism and what additional support Kelly needed, plus strategies to help provide her with ways to cope with her anxieties and processing relating to her autism.
“For instance, we created a ‘5 point scale’ together, to show how she was feeling (Happy/Calm; Worried/Anxious; Unhappy/Frustrated; Annoyed/Agitated; Angry/Aggressive) and how best for those around her to support her. This also helped at times when she was experiencing high anxiety or stress and wasn’t always able to communicate verbally, so she used her 5-point scale to point out her feelings.
“Kelly found it difficult to have ‘free time’ so, to support her with structure and predictability, we created a weekly timetable of activities she could enjoy each day. Kelly also found it difficult at times to express her anxieties, worries and feelings, so we got a diary where she could write them down. Then when she was ready, she could talk about and resolve them with me or her support team.”
“She is now extremely settled, motivated, and has a whole new routine that includes a paid job working as a Quality Checker for Consensus. She’s communicating with the staff effectively; other supported individuals in the house understand her and her autism; she’s just been away on holiday with her family. I’m delighted that Kelly doesn’t need my specialist support any more – but she’s made me promise to keep popping-in for a chat and a coffee with her every few months.”
“It took me a while to be able to trust the staff and explain how I was feeling”, says Kelly. “Now I have strategies in place that Angela helped me with, and I’ve got people I can talk to when I’m not in the right frame of mind.
“Last summer I gave a presentation with my PowerPoint slides to everyone living in the house. I wanted to apologise for my behaviours before, and help people to understand how to help me, and how best to support me at times when I am feeling upset or anxious. Then in the evening I prepared and cooked a meal for all of my friends at Parvale to say thank you for their support.”
Rhiannon remembers that, because of autism causing additional anxieties for Kelly alongside those of PWS, food had been a real problem when the team first met her: “She couldn’t be offered any kind of options, whether it was for a meal or just a pot of yogurt.”
“Before I came here, I struggled with variety and choice. I didn’t even like to see different flavours around me,” agrees Kelly. “Now my biggest achievement is overcoming those challenges that include walking into kitchens as part of my Quality Checker work, being around food in certain situations, and being able to control my PWS as well as doing my job at the same time. Not that I let those defeat me, as I know how to work through and around them.
“Without my job, I’d be in a different place – with it, I’m really happy. I love helping people who are less able than me, and giving them support and advice to achieve some of the things that I have.”
“It’s inspiring to see how well Kelly has coped and how far she’s has come in just a few years – benefitting from new opportunities, making choices, and finding success in something she loves to do,” Rhiannon adds. “Her job is one important aspect of that journey, but outside of work she’s busy with all her other leisure interests and activities too – including getting into the kitchen to cook and loading the dishwasher afterwards! It’s just one example of her amazing, positive progress since she’s been here with us.”