Awareness of PDA has been growing rapidy in recent years. The National Autistic Society run annual conferences on the subject and research is now being conducted by a number of different institutions, so understanding of the condition is developing apace.
Parents, schools and health and eductional professionals are finding that the management strategies that come with an understanding of PDA are extremely helpful for children and young people in their care.
It is good news that thousands have been through training or attended conferences on PDA in the past year alone.
However, although there is increasing understanding amongst a range of professional groups, the 'medical model' which underpins the practice of clinicians has been constraining some, particularly those who don't have sufficient experience of knowledge of the condition.
Survey of Professionals
Members of the PDA Society often talk about the difficulties of finding individual Autism practitioners with sufficient knowledge of Pathological Demand Avoidance syndrome to be confident that they are making an informed diagnosis. This is important, not for reasons of diagnosis itself, but because when usual ASD strategies are used, young people with PDA fail to progress whereas with the correct advice a significant difference can be made.
In order to find out more, the PDA Society conducted a survey in 2016 of over 50 professionals who work with, assess and diagnose young people with ASD. The aim was to find out about their attitude to the diagnosis of PDA and their current state of knowledge.
The results of the survey showed that half of the clinicians who were responsible for diagnosing an Autism Spectrum Disorder (ASD) were prepared to diagnose PDA specifically. In addition, others would diagnose ASD and then describe the demand avoidance difficulties within the 'profile'. This is an entirely acceptable alternative: the purpose to focus on the problems that are causing most difficulty to ensure appropriate management strategies and resources may be brought together.
The survey suggested that we are reaching a tipping point with knowledge spreading quickly in recent years, but also highlighted some difficulties. First, PDA is a relatively rare condition, so may practitioners had generally only come across just a few individuals with the characteristics. In addition, many were not up to date with the latest research, which is again not surprising, given its infrequency.
- Two thirds felt constrained by lack of awareness of PDA amongst their colleagues locally & by a lack of national recognition.
- Personal experience was often limited, as expected as PDA is relatively rare.
- Knowledge of specific management strategies was generally confused or poor, including amongst many of those who thought their knowledge to be good.
- The lag in published research was considered a problem, but many were also unaware of the latest research.
- Diagnostic labels are used inconsistently, with around half using the term PDA within the diagnosis, and some others finding individual profiling sufficient.
- It showed that there is more work to be done, as there are many people who are not aware of the latest research or of the detail of helpful management strategies.
It seems that as knowledge and experience spreads, PDA will be identified more easily within assessments and diagnoses. As a Society this report gives us some direction as it highlights the need for professionals to have greater awareness of the latest research and management strategies.
It is concluded that professionals will benefit from:
- greater awareness of the latest research;
- case studies to illustrate similarities and differences with others on the autistic spectrum;
- better explanations of management strategies;
- and tools to improve understanding of the individual child’s condition.
Read the survey report here:
Published: July 2016
The PDA Society is working to share research outcomes as they are published and to generate more materials to improve understanding of the condition. This series of Case Studies should be especially helpful for those who have limited experience of working with those with PDA, as they explain behaviours, what worked and what didn't.
Our Booklet PDA Booklet for Practitioners (April 2016) is is a helpful starting point for anyone wanting to learn more about PDA. Please do pass it on to anyone who you think will benefit from it.