Good quality academic research is essential for developing our understanding of the PDA profile of autism, including how it is best defined and how it relates to other conditions. A range of perspectives is evident currently and research is in its infancy.
Research is needed in order to reduce the possibility of individuals being disadvantaged or discriminated against through misunderstanding. PDA individuals can be particularly vulnerable to being misunderstood, and are often unable to access education (even specialist settings) or employment in later life. As adults, there is some evidence that individuals with this profile are more likely than others autistic people to find themselves in mental health institutions or the criminal justice system. Local and national campaigns consistently demonstrate the failure of services to meet the needs of individuals with a PDA profile of ASD.
Academic research focuses on learning more about the characteristics and causes of this autism profile, and also provides clinicians with information, protocols and surety around diagnostic traits. For some professionals and families, the questions about ‘what to call it’ and ‘where it fits’ have been fundamental and all-consuming. For others, the key focus has been on ‘what helps’.
Research isn’t only done by academics – very valuable information can also come through other routes. Some studies look at the experiences of professionals to find out what is working in practice. Others focus on the lived experience which provides a detailed exploration.
At the PDA Society, we’ve conducted a number of surveys as described below, and have documented the lived experience in a series of case studies.
The Society seeks to work collaboratively with all those with an interest in neuro-developmental conditions and tracks on-going research work. Please contact us if you are involved in research work, we’d love to hear from you.
2019 – Research meeting
On Tuesday 8th January 2019, the PDA Society hosted a research meeting to share current findings, thinking and insights around the ‘PDA profile’ of autism by academic researchers and other stakeholders. The aim was to share existing research work, build greater common understanding, identify research priorities and focus on what can be done to help. 31 participants came from across the UK and Ireland and all found the meeting to be worthwhile and positive. One area of strong agreement was that autism generally is not well understood or supported by services. The PDA Society took away from the meeting the importance of developing a cohesive and inclusive argument for change.
Dame Uta Frith chaired the event and finished by acknowledging that many of us felt some confusion about the mixed conclusions of research to date, but that confusion is an important part of the process and a step on the path towards understanding!
Thanks goes to all the contributors. Thank you to Prof Francesca Happé for her support for the meeting and providing the venue at King’s College London, and to Kevin Cooper who provided funding for the event.
2018 – PDA Society Survey
In 2018, the PDA Society published a report which reveals how this group of autistic people is at especially high risk of being misunderstood.
The report, entitled “Being Misunderstood”, is based on the largest survey to date on the topic of PDA, conducted online for two weeks in March 2018 and completed by 1,445 parents, professionals, PDA adults and their partners/family.
The results show that very many young people with a PDA profile of ASD are finding it very difficult or impossible to cope in the school environment, and the lack of support available from services means that families are often relying on their own research to work out how to support their children. The results demonstrated the ways in which difficulties can persist into adulthood, exacerbated by a continued lack of understanding and support from services.
70% of 969 young people were not able to tolerate their school environment or were home educated.
71% of 79 adults and 70% of 1194 parents reported that they had found a lack of acceptance or understanding of PDA a barrier to getting relevant support
67% of 675 parents reported that they were dissatisfied with the help received from their Child and Adolescent Mental Health Service (CAMHS); only 20 individuals reported that a CBT-type approach had helped.
49% of 768 young people with diagnoses had been given one that included PDA or a demand avoidant profile, or used similar terminology.
In 2016, the PDA Society conducted a survey of 52 professionals to look at diagnosis of autism and PDA. A number of barriers were found, including lack of experience with this autism profile and lack of awareness about the research available. That led to work by the PDA Society to write up case studies and encourage further communication so as to spread knowledge more widely.
Prior to the PDA Society’s inaugural conference in 2015, 138 parents completed a survey describing their experiences. Two results stuck out for us. First that 80% of those who had been involved with CAMHS had had a poor experience. Second that the average number of diagnoses per child was 2.5.