From PDA Contact Group to PDA Society
The PDA Contact Group was founded in 1997 by Jan Seaborne, a mother of a child diagnosed with PDA. The group was affiliated to Contact a Family, and its primary purpose was to put people with an interest in PDA in touch with each other. Donna D’Amore, also a parent, designed the original website, which was subsequently maintained by John Elvin, himself a parent of a child with PDA. A forum was also launched which had areas for general viewing, as well as specific forums for both parent and professional members.
The group initially published and distributed a number of newsletters, however as the forum membership grew it was decided to cease distribution of paper copies, and provide the information via the main forum. Telephone support was also offered by Jan, John and Fran Mitchell to anyone wishing to make enquiries about PDA.
From 2008 the National Coordinator role was carried out by Margo Duncan, with the support of other parents who all have children diagnosed with the same condition. Various other parents have become involved in the activities of the group over time, moderating the forum content, answering online and telephone queries, handling new membership applications, as well as speaking from a parent’s perspective at many conferences and events held by Autism East Midlands and the National Autistic Society.
We have supported professionals to encourage families to take part in research projects relating to PDA.
Margo, Debra West and Tracy Rose have created leaflets with information about PDA for both parents and teachers, as well as a ’Guide to Autism Spectrum Conditions in the Early Years’. These leaflets have been professionally printed and distributed to parents and professionals on request, as well as being available online.
Margo co-wrote the information for the National Autistic Society website, and co-authored ‘Understanding Pathological Demand Avoidance in Children,’ the first book about PDA, published by Jessica Kingsley.
Neville Starnes, another key member of the group has created a number of You Tube videos relating to PDA which have proved to be very useful to both parents and professionals in gaining an understanding of PDA and the alternative strategies for supporting someone with this diagnosis. He also co-ordinated the production of some more recent PDA newsletters.
Paula Webb and Neville Starnes are proactive in responding to posts on the forum, offering help and advice wherever possible. In addition both provide support in their local areas to other parents.
The group maintains links with Autism East Midlands and the National Autistic Society; meeting regularly and working together to discuss research projects, training and further ideas of how raise awareness of this condition across the UK and beyond.
The group has for some time aimed to achieve charity status, and in 2013 some supportive parents initiated a fundraising drive to help enable us to raise enough to enable us to apply for charity status.
2013 also saw the first ever PDA awareness day, May 15th, around which a number of fundraising events took place to raise funds for our group.
We also applied for, and were subsequently awarded a National Lottery ‘Awards for All’ grant to develop this new website and forum; and to create PDA information packs to distribute to CAMHS teams and special schools across the UK. These fundsenabled us to move further towards our goal of becoming a registered charity.
As we were launching a new website and forum, and with our ambitions to be a formal charity, we decided to also rename the group as the PDA Society to better reflect our future goals as a group. We will always be proud of our beginnings as the PDA Contact Group but hope our role will expand beyond that for which our group was first established.
2014 saw the development and launch of our six week 'PDA course for Parents', with two pilot courses being held in the Nottingham area. During 2015 we secured funding and were able to deliver six courses in different areas including Rotherham, Liverpool, Leamington Spa, St Albans and Leeds. A number of parents attending these courses have also trained to faciliate future courses, so that we can deliver more training courses in the future.
In September 2015 we held our first ever PDA Society conference for parents, in Northampton. The conference was very well received and had over 240 delegates in attendance.
In addition we have now recruited and trained a number of volunteers who assist the PDA Society in answering email and telephone enquiries.
We were officially registered as a Charity in England and Wales in January 2016, and our registered charity number is 1165038
We would like to thank the founder members of the group; Phil Christie and the team at the Elizabeth Newson Centre and Autism East Midlands, who have helped to ensure the content of our site is in line with current best practice knowledge of PDA. We would also like to thank our volunteers, course facilitators and the many people who have fundraised or supported us in various ways over the years.