Please, note, this is one of our older posts, and may not reflect the most recent information. Please search ‘PDA’ on our site to access more information, head to the PDA Society’s website, or search the work of Kristy Forbes – she very eloquently explains how PDA is expressed as an autistic person.
According to the PDA Society, an organisation that provides information and support for parents, families and teachers, PDA is currently recognised as an autistic profile. Key areas of concern for the individual are: ‘An anxiety driven need to be in control and avoid other people’s demands’, and ‘An Intolerance of Uncertainty.’
Some of the key difficulties experienced by individuals with PDA include social communication and interaction difficulties, as well as restrictive and repetitive patterns of behaviour, and some sensory behaviours.
‘An individual with PDA will also have tremendous difficulty complying with their own self-imposed expectations and with doing things that they really want to do’, advises the PDA Society. Importantly, the extreme nature and sometimes obsessive quality of the demand avoidance seen in individuals with PDA is very different to the avoidance seen in other autistic individuals.
“Specifically, people with PDA will avoid demands made by others, due to their very sudden, and usually high, anxiety levels when they feel that they are not in control,” notes the excellent website “PDA Resource”, which has links to various recommended websites, blogs, documents, graphics etc.
What about diagnosis?
The international and American diagnostic manuals do not currently recognise PDA as a separate diagnosis or a subgroup within ‘autism’. Hence, when many of the key features of PDA are present alongside the other traits of autism, individuals deemed to have PDA may be given a diagnosis along the lines of: ‘Autism – Unspecified’ (see the latest diagnostic guidelines, the ICD-11, HERE) or Autism Level 1 (see America’s DSM5 diagnostic manual); with a note of a demand avoidant profile on the person’s report.
One important point to note about PDA is that different clinicians and ‘experts’ have differing levels of experience and exposure to the autistic profile, which is still relatively new, in a medicinal or clinical sense; meanwhile, some authorities and health bodies (in the UK at least) are also reducing their autism diagnosis budgets. A combination of factors means some clinicians are seemingly not always willing to diagnose PDA; although private autism assessment providers may have more experience and exposure, e.g. if they’re private specialists in the field. (Some NHS providers may also be specialists in the field of PDA, but may need out-of-county referral to their services.)
Read more in our post titled ‘Gaining autism assessment in the UK – including Pathological Demand Avoidance or PDA’ HERE.
There is a useful graphic by Newson, Marchal and David which we have shared below, called ‘The family of pervasive developmental disorders’, sourced from the website “PDA Resource”. It is very dated now, using the term ‘Asperger’s’ for example, and quoting the ‘Triad Of Impairments’, but useful as a reference, e.g. to see PDA’s ‘journey’ within the autism field.
Spectra.blog HIGHLY recommends the book ‘Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals’, it’s a great (if in depth!!) read. Check out the link below.
(Click here to read our blog on autism diagnostic criteria – updated summer 2018.)
A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism; the information we post here is based purely on our own exposure and experiences.