In recent days and weeks the media spotlight has been focussed on individuals with autism and/or learning difficulties who are trapped in Assessment and Treatment Units (ATUs) and Secure Units – hospitals for those with severe mental health problems, including those who have been sectioned.
Not only do most of the stories highlight how unsuitable these institutions are for autistic children and adults, they also shockingly tell of horrific mistreatment.
In several of these stories, unrecognised, misunderstood or poorly supported PDA has been identified as being a key part of the problem.
This is a summary of these stories with links for further information. The PDA Society is working with others to establish the best way to collate all the current ATU stories in one place, so this is just a start. If you would like to share your story please contact us. The PDA Society is calling for an urgent rescue mission for long term autistic ATU ‘residents’.
Bethany
Bethany’s Dad, Jeremy, was first interviewed for BBC Radio 4’s ‘File on 4‘ programme, revealing how his daughter is held in a small cell with just a bed and a chair, with her food and all communication passing through a hatch. Many are following Bethany and her family’s journey through hope and despair via her Dad’s Twitter feed. Jeremy is working tirelessly to secure better care for Bethany and to raise the wider issue, including a visit to the BBC Breakfast sofa and an invitation to meet with the Secretary of State for Health and Social Care, Matt Hancock (who has also recently ordered an inquiry through the Care Quality Commission). Jeremy explained that a key part of the problem has been the lack of understanding of Bethany’s PDA traits.
Lee
Lee, 43, is deteriorating rapidly in an unsuitable mental health unit miles away from her family home. Her Mum Gillian believes that all her placements have broken down because of lack of understanding of PDA and is desperate to get her home. She tells Lee’s story on her petition page.
Chris
Chris, 25, achieved good GCSE exam results before being dispatched to a Learning Disability unit when he became anxious over a move. 9 years later he is still there, heavily sedated in cell-like seclusion without even toilet paper or handwash. His Mum Kerry tells his story on her petition page begging for him to be allowed home. Kerry feels that Chris has unrecognised PDA traits.
Sandra
Sandra (name changed) was in a lovely care home with a team who understood her needs, but the local authority moved her to try and save money. The new placement didn’t understand her needs (now understood as a PDA profile) and she ended up in hospital. After more than 3 years there, she is finally returning to the place she started.
Stephanie
Stephanie died in an ATU four years ago. “Stephanie had a form of autism called Pathological Demand Avoidance (PDA) and the misfortune to live in a nation that imprisons people with learning disabilities, treating them in ways that should have been banished to the dark past,” wrote Ian Birrell in his iNews article.
