PDA and ATUs/inpatient mental health settings

Autistic people (adults and children) are very vulnerable to being admitted to mental health settings and ATUs (Assessment & Treatment Units) because when autism isn’t properly identified, understood or supported it can be mistaken for, or lead to, mental health difficulties. The Mental Health Act currently allows the detention of autistic people and people with learning disabilities who show behaviour that challenges, however, this is under review in England and Wales.

These misunderstandings can mean that autistic people often remain stuck in these settings for a long period of time. In addition, these services are psychiatry-led; psychiatrists aren’t always trained in autism and follow a ‘medical’ rather than a ‘therapeutic’ model, so the focus is often more on ‘treatment’ rather than creating an autism-friendly environment. These regimes and ‘behaviour modification’ approaches can be especially triggering for people with strongly demand avoidant traits.

There are several additional reasons why PDA individuals may be particularly vulnerable:

  • they may never have been accurately diagnosed – for reasons why this might be, please see Identifying PDA
  • they may never have had appropriate support – it may be that the underlying cause of any differences/difficulties haven’t been identified and therefore interventions don’t meet needs
  • those trying to support them may not have had appropriate training – helpful approaches with PDA turn parenting, teaching and support norms upside down and conventional approaches often make things worse, so training in what works is essential.

As a result, behaviours can be misunderstood and escalate rapidly …

The PDA Society became involved in raising awareness and campaigning for change on this issue after becoming aware of several cases, some of which are documented in these ATU stories. We called for a rescue mission ATU scandal – PDA Society calls for Rescue Mission and supported Bethany’s Dad’s very high profile campaign Bethany’s Dad’s meeting with Matt Hancock MP as well as many others behind the scenes. The Joint Committee on Human Rights conducted an inquiry which concluded that the human rights of many autistic people are being breached in mental health hospitals and that this must not be allowed to continue – you can read the report here.

We also created some new resources:

If you or someone you care for or work with is at risk of admission, already an in-patient or about to transition to a community placement, the following pointers may be helpful – we’ll be adding to this information over time. Please also do get in touch with our enquiry line. The National Autistic Society’s Autistic people and inpatient mental health hospitals page also includes information and tips on avoiding crisis and admission to an inpatient mental health hospital and their Autism Inpatient Mental Health Service also offers advice and support to autistic people and their families in England who have been detained in a mental health hospital, or are at imminent risk of detention or re-detention.

If at risk of admission:

  • Is there an accurate diagnosis? If not, press for one urgently.
  • Is the right support in place – can training be provided ASAP?
  • It’s important for everyone to have the mindset that any ‘behaviours that concern’ are due to an underlying neuro-developmental condition – changing language can change perspectives, so talk about ‘autistic behaviours’ and ‘anxiety responses’.
  • Share information about the PDA profile of autism.
  • Do everything possible to avoid being sectioned and admitted.

If already an in-patient:

  • Ensure that you can visit and are involved at every stage.
  • Is there an accurate diagnosis? If not, press for one urgently.
  • Is the right support in place – can training be provided ASAP?
  • It’s important for everyone to have the mindset that any ‘behaviours that concern’ are due to an underlying neuro-developmental condition – changing language can changes perspective, so talk about ‘autistic behaviours’ and ‘anxiety responses’.
  • Share information about the PDA profile of autism.
  • Ensure that regular Care Treatment Reviews are undertaken. In this NDTi webinar,  Jeremy (Bethany’s Dad) and NDTi Associate Ann Memmott share their experience on the importance and value of involving autistic people in the Care and Treatment Review process and the difference this made personally to Beth.

If transitioning to a community placement:

  • It is impossible to over-emphasise the importance of how robust and careful the transition planning and process must be.
  • Be aware of funding tensions between services (discharge can be delayed as local authorities resist the cost of a care package moving to them when in-patient costs are being met by the NHS).
  • Ensure that the team around the PDA individual is very small and trusted.
  • Ensure that all team members have had training in the PDA profile of autism.
  • Share information about the PDA profile of autism.
  • Visit the placement several times, meet all key staff and ask lots of questions to make sure it’s the right placement.

Ben and Beth’s stories (plus this Sky News article and TV news report on how Beth is doing one year on), demonstrate what can be done with the right person centred community support, and can be used as examples of best practice for others.

Please also see From secure accommodation to supported thriving: Steps for autistic young people – Ann Memmott article.

This comprehensive and straightforward NDTi “It’s Not Rocket Science” report makes recommendations for helpful approaches and changes that providers of CAMHS inpatient services can make to improve the sensory environment for autistic individuals. It also references PDA in Bethany’s story (Page 37).