Research

Research is essential for developing our understanding of the PDA profile and it isn’t all done by academics, in fact we can all have a role to play.
 
The purpose of research from the point of view of academics is to learn more about the characteristics and causes of this form of autism, and through that work also provide clinicians with information, protocols and surety around diagnostic traits. Others will look at the experiences of professionals to find out what is working in practice, and others still identify ‘case studies’ which provide a detailed exploration of an issue.
 
Research isn’t only done by academics though; very valuable information can also come through other routes. At the PDA Society, we have conducted a number of surveys which provide a snapshot of the situation on the ground.
 

Academic research

There are now a number of institutions actively conducting research into PDA and Liz O’Nions has kindly provided a summary of the work that is going on.
>  Summary of research developments
More papers are being published all the time and our list of peer-reviewed articles is regularly updated.
>  Peer reviewed articles
 

Survey of professionals

In 2016, the PDA Society conducted a survey of 52 professionals to look at their diagnosis of Autism and PDA. A number of barriers were found, including lack of experience with this form of autism and lack of awareness about the research available. That led to work by the Society to write up case studies and encourage further communication so as to spread knowledge more widely.
>  Read the survey results and download the report
 

Survey of families

Prior to the 2015 PDA Society conference, 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 20% were either school refusing or home-educated, with others not attending due to exclusion. School attendance is a particular difficulty for those with PDA.
>  The results are available here
 

CRAE research on exclusion

The Centre for Research on Autism in Education conducted a research project for the NAS into what helped young people who had been excluded. They looked at the work of the ‘Hub’ at the Robert Ogden School in Rotherham. The work is helpful in relation to PDA because (although it’s not specifically described in the report) 6 of the 9 pupils involved, and three quarters of all the young people at the Hub, have a PDA profile. It should be noted that the school informed us that more information could have been included about the positive outcomes and what students moved on to do, so the report should be read with that gap in mind.
>  Read the report here
 

Hertfordshire families

A survey of 38 families in Hertfordshire showed that many felt desperate and a majority described how local services had not helped them. These results were published with a call to action, with the support of local Autism charities, and taken to the Herts All-Age Autism Partnership Board with a call for leadership on recognising PDA.
>  Read the report
 

How you can get involved

 
>  Consider whether you or your family might like to volunteer to help with research
>  If you feel there is a particular focus area that the PDA Society might be able to address, please get in touch with us (info@pdasociety.org.uk)
>  If you would like to campaign for change locally, we can provide you with guidance (comms@pdasociety.org.uk).