Improving Outcomes - what's needed - Being Understood

It is a year since we launched our ‘Being Misunderstood’ report which described the results of a survey of almost 1,500 people, highlighting the regular failure of services to understand and meet the needs of those with a PDA profile of ASD. We've just added the regional and education reports, pulling out key information relating to educational experiences and data/comments for 10 UK regions.

Over this past year, we've seen a number of brave families talk to the media about their personal experiences; a protest organised by PDA Action outside parliament and a resulting meeting with the Department of Health and Social Care and NICE; many people writing to their MPs; and an active campaign around poor practice in Assessment and Treatment Units initiated by Bethany's case.

What’s happened over the past year

Most importantly, there is an increase in awareness in training and in improved understanding, and it has all been greatly enhanced by hearing PDA voices.

The PDA library is also growing with new books published:
  • PDA by PDAers compiled by Sally Cat
  • Me and My PDA by Dr Gloria Dura-Vila
  • Collaborative Approaches to Learning by Ruth Fidler and Phil Christie
  • The PDA Paradox by Harry Thompson
  • It’s a PanDA thing by Rachel Jackson
  • and the first book in Norwegian about PDA.
Two other books feature characters with PDA: Can You See Me? by Libby Scott and Rebecca Westcott and Underdogs by Chris Bonnello.

Our hopes for this year
  • Research - There is no doubt that robust research is needed as a basis for identifying what can help and how we can best talk about the PDA profile. This may take time, but further steps will be made over coming months.
  • Leadership - Clinicians are increasingly sharing their experiences and advocating the value in looking at some individuals through a lens of ‘demand avoidance’.
  • Good practice - More is being and needs to be done on good assessment pathways and interventions, demonstrating approaches that can work for adults, within education and within families. Examples of good practice are being shared to mark PDA Day in our Improving Outcomes section.
  • Inclusion - Autism, in all its presentations, is still widely misunderstood and it is essential that we all work together to build greater awareness of neurodiversity.