People with Pathological Demand Avoidance syndrome will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control.
The features of Pathological Demand Avoidance listed by the National Autistic Society are:
- obsessively resisting ordinary demands
- appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
- excessive mood swings, often switching suddenly
- comfortable (sometimes to an extreme extent) in role play and pretending
- language delay, seemingly as a result of passivity, but often with a good degree of ‘catch-up’
- obsessive behaviour, often focused on people rather than things.
Often there is also clumsiness and a passive early history. People with PDA tend to be better at social communication skills than most people on the spectrum.
A child with PDA will resist normal demands obsessively (for example, ‘please wash your hands’), finding all manner of ways to ‘refuse’ and contain their anxiety. These ways can be as diverse as distracting, making excuses, employing delaying tactics, retreating, arguing, or becoming violent. Traditional parenting techniques involving rewards, sanctions and praise can actually increase the anxiety, and therefore the demand avoidant behaviour, of a child with PDA.
PDA was first documented by Elizabeth Newson in 1983 as a ‘Pervasive Developmental Disorder seperate from, but related to, Autism’.
PDA is not recognised in the DSM-V or ICD-10 diagnostic manuals. In the UK, it is a bit of a ‘postcode lottery’ whether PDA is diagnosed and/or recognised by local councils. The Elizabeth Newson Centre in Nottingham provides a diagnostic service for PDA, but always check whether you local council will accept a PDA diagnosis for the purpose of providing services.
However, with more information becoming available, PDA is being diagnosed and recognised in increasing numbers by Local Authorities, Social Care and Education Authorities. Sometimes PDA is recognised by an education authority even though it can not be diagnosed in that area!
The Autism Education Trust publish National Autism Standards for schools. Their resources list contains two articles about PDA. The articles are labelled ‘5.2 Strategies for teaching pupils with PDA’ and ‘5.3 Carlile A case study of a pupil with PDA’.
There is some confusion as to whether PDA is the same as Oppositional Defiance Disorder. However there seem to be some distinct differences between the two; PDA children have more emotional difficulties, more childhood difficulties than children with ODD. There is a link here to outline the main differences.
Elizabeth O’nions has developed the Extreme Demand Avoidance Questionnaire (EDA-Q) as part of her ongoing research into PDA. It helps to identify individuals with an elevated risk of having a profile consistent with PDA. It can be completed by both teachers and parents to give a measure of how demand avoidant a child is, but is not yet considered a diagnostic test.
Jane Sherwin, whose daughter has PDA, has produced this wonderful booklet containing more detailed information. It can be a useful guide to print out and share with professionals involved with a child. You can follow Jane on Twitter at @lifewithPDA
She has also written PDA information cards to share, to help to raise awareness.
The PDA resource is a great website, holding a great deal of information about PDA in one place. It links to various websites, facebook pages, blogs and documents, helping parents, carers and professionals to better understand PDA.
The book called ‘The Panicosaurus‘, by K I Al Ghani, contains some useful child-friendly strategies to help young children deal with their anxiety.
Phil Christie et al wrote a book called ‘Understanding Pathological Demand Avoidance Syndrome in Children‘. This guide is an incredibly helpful volume, full of understanding, strategies and case examples. It is written by both parents and authors. It contains a handy list of resources too. It’s is a must-read for anyone who knows a child with Pathological Demand Avoidance.
Jane Sherwin has written an amzing book about PDA, called ‘My Daughter Is Not Naughty‘
Full of advice and support, this book is an honest account of one family’s experiences of raising a child with Pathological Demand Avoidance Syndrome (PDA). It includes strategies to help manage PDA behaviours, information on obtaining diagnosis and raising awareness, and explanations to help readers gain a better understanding of the condition.
Meet Issy an 11-year-old girl with pathological demand avoidance syndrome (PDA), a condition on the autism spectrum. Issy invites readers to learn about PDA from her perspective, helping them to understand how simple, everyday demands can cause her great anxiety and stress. Issy tells readers about all the ways she can be helped and supported by those around her. This illustrated book is for readers aged 7 and upwards, and will be an excellent way to increase understanding about PDA in the classroom or at home. It also includes practical tips and recommended resources for parents and professionals.
There is a booklet, available on request from Norsaca, for siblings of children with PDA.
Some great bloggers writing about PDA are:
and Me, Myself and PDA, written by Julia Daunt who is an adult with a PDA diagnosis.
Please do leave comments to this post if you found it useful. Alternatively join our forums and discuss PDA there.