“I really thought I’d have my tongue tied if I stood up to shout. But all they did was listen without their ears.”
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 individuals with Autism Spectrum Disorder (ASD).
“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?
When many of the key features of PDA are present alongside the other traits of ASD, individuals deemed to have PDA may be given a diagnosis along the lines of: ‘High Functioning Autism Spectrum Disorder (ASD) with a demand avoidant profile’.
One important point to note about PDA is that different clinicians and ‘experts’ have differing levels of experience and exposure to the condition, 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! (We will be writing about the information surrounding PDA and its diagnosis in the UK in much more depth in other blog entries.)
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”.
We recommend 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.
People with PDA, like all adults on the autistic spectrum, are likely to experience autistic shutdown. Read more HERE.
A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism Spectrum Disorders; the information we post here is based purely on our own exposure and experiences.
It’s a cliché perhaps, but many people with classic autism and high functioning autism love music, for many reasons. What better way to deal with life than to escape within a cool song? In the words of the Housemartins: “I was walking by the river, I was asking myself questions. But the answers I came up with didn’t fit. I really thought I’d have my tongue tied if I stood up to shout. But all they did was listen without their ears.”