The recent stories about autistic people held in ATUs, widely reported in recent days and weeks, have shocked the nation. We are all now very aware of ‘care’ that is harmful and ‘treatments’ that look more like an abuse of human rights.
Sadly, none of this is new. It had been assumed that the Government’s ‘Transforming Care’ initiative had resolved the issues brought up in the ‘Winterbourne View’ scandal. But many issues clearly remain.
It appears that there are a number of key problems:
- a medical profession that doesn’t have sufficient understanding of, or training in, autism*
- a failure to engage with family members
- a lack of individualised care based on genuine understanding of specific needs*
- financial systems which fail to support sufficient suitable community provision.
* And in several of the current high profile cases, unrecognised or misunderstood PDA traits are felt to be at the heart of the difficulties.
The Government is trying to address some of these issues: joint commissioning (particularly around care for the elderly) is being trialled; last week the #AskListenDo campaign was launched, encouraging services to listen to those with autism or learning disabilities and their families; and, following Paula McGowan’s petition after her son Oliver’s death, the government has recently committed to mandatory autism training for all NHS staff.
However, the current cases make it clear that we cannot simply wait for these trials and campaigns to evolve. Immediate action is required. The PDA Society is calling for an urgent rescue mission for long term autistic ATU ‘residents’. This would involve commissioners working with specialist experts, experienced in complex presentations of autism, to determine a way forward on a case-by-case basis, for example through Care and Treatment Reviews.
Many wonderful organisations are contributing to the debate and trying to work out how to make a difference. The PDA Society is focusing on contributing expertise and resources, including training on the PDA profile of autism, and continued support for parents and individuals via our enquiry line. We are also adding our voice as a representative of the PDA community to the growing chorus of pressure on the Government to act. Autism campaigner Kevin Healey has set up a petition calling for an end to autistic people being held in ATUs – we have seen that petitions can make a real difference, so please sign it here.