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.
Can’t Help Won’t is the catchy title of an interesting article on PDA published recently in the Huffington Post. It’s quite a long read, but well worth it.
The article begins with an outline of what PDA is. It then moves on to note the lack of awareness of the condition:
Unfortunately, until recently there has been limited professional interest in the syndrome and a lack of awareness of its presentation amongst clinicians, despite the huge challenges faced by those with PDA and their families, friends and carers.
The situation in the UK is slowly improving, according to Phil Christie, a leading British clinical psychologist in the field of autism. However, Christie says:
clinicians have been the group that has been hardest to attract to conferences and training events.
More positively, the article gives examples of children whose condition has improved somewhat after a period of following PDA guidelines. It ends on this hopeful note:
If we can help children with PDA through their childhoods feeling for the most part positive about themselves, and teach them to develop the coping methods that they’ll need to get there, then … once they attain adulthood and secure increased control of their lives, there’s little reason that their anxieties won’t reduce.
As I said at the outset, Can’t Help Won’t is well worth a read. Try it!