PDA Society Research

The PDA society have conducted a number of surveys which have helped us to understand the challenges facing people with PDA. Our reports and analysis on the findings are listed below.

2024 – PDA in Our Words

This report was written in partnerships with four PDAers, Riko, Leila, Hannah and Jennifer, in response to the findings of our 2023 survey. Our goal is to amplify the voices of the PDA community and to shine a light on experiences which are frequently ignored and misunderstood. The full research findings can be read here.

2023 – PDA & Mental Health

In May 2023, PDA Society ran a survey of PDA adults and their families, as well as parents of PDA children. There were 921 responses to the survey and the results were clear; autistic-PDA people are experiencing a mental health crisis. PDA Society published a report of its key mental health findings from the survey in November 2023, which you can read in full here

2022 – Research priorities

High quality research should be informed by what matters most to the PDA community, and identifying the key unanswered questions is the first step. The Society is conducting a research priority-setting exercise with the aim of supporting academic institutions in their development of research on PDA. Find out more here.

2021 – PDA & sleep survey

In November 2021 we ran a survey to gather some information around people’s experience of sleep and PDA. 569 people completed the survey in just 12 days and a summary of the findings is available here. The PDA Society is working with the Sleep Charity to develop a new resource on sleep and PDA, based on these results and the lived experience of PDA individuals and sleep practitioners, which we hope will be useful.

2021 – Professional best practice

In March 2021 we ran a survey asking the PDA community to share positive stories of professional best practice and what has worked well in relation to PDA. 120 people responded and a collection of the experiences feature in the PDA best practice videos here.

2021 – Animals & PDA survey

In early 2021 we ran a survey to gather information about people’s experiences of animals and PDA. 681 people responded to the survey and the results are available here.

2020 – 5th anniversary survey

We undertook a survey in late 2020 to review the PDA Society’s impact to date and help shape our services and projects for the future, prior to our 5th anniversary on 5th Jan 2021. It was encouraging to see that understanding of PDA had been transformational in terms of outcomes for so many individuals, families and professionals. A detailed summary together with stats and comments from respondents is available here.

2020 – PDA life under lockdown survey

In May 2020 we ran a short survey to gather information about the impact of lockdown on the PDA community. 804 people responded, with 555 providing additional comments. The headline result, along with some of the individual comments we received, are available here.

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.

In addition, detailed regional reports and a focused report on the educational experiences of children with a PDA profile of autism were produced:

2016 – Survey of professionals

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.

2015 – Survey of families

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.