A report by the UK-based PDA Society shows that young people with a PDA profile are at high risk of being misunderstood. Key findings include:
- 70% aren’t in school or regularly struggle to attend
- 70% have found a lack of understanding/acceptance a barrier to getting support
- 78% have difficulties with daily tasks
- 49% of young people have a diagnosis that includes mention of a PDA profile
- Conventional ASD approaches hinder rather than help
The report’s author says,
“Usual good parenting techniques such as use of praise, boundaries and ‘rewards and consequences’ fail; whereas negotiation, collaboration, minimal ground rules and careful use of language helps. Without an understanding of the profile and the approaches which work, one can see why professionals may sometimes look at a family and think that things may be the parent’s fault.”
The full report – Being Misunderstood: Experiences of the Pathological Demand Avoidance Profile of ASD – offers recommendations for service providers, professionals, parents and others. It can be downloaded from the PDA Society’s website here.
PDA Matters is offering free copies of Ross W. Greene’s book, “The EXPLOSIVE Child” to those affected by PDA and interested in some counterintuitive approaches to handling easily frustrated, chronically inflexible children. To obtain a copy, please E-Mail your name, shipping address and briefly how you are affected by PDA to Books@PDAMatters.org
We are able to offer these books at no cost to the requestors thanks to the generous donations we have received through www.PDAMatters.org/Donate
I wanted to bring to your attention a great new paper that has been published in the European Child & Adolescent Journal titled, “Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO)“.
You can find the paper linked through our /resources/links/ page here.
From my non-professional perspective, what is exciting about the approach outlined in this paper is the connection between an existing clinical assessment tool (DISCO) and PDA. This should improve the ability for clinicians to separate PDA cases from other psychiatric conditions due to the pervasive use of DISCO.