BRIGHTON & HOVE PDA FORUM
covering the Sussex NHS Area for parents of those with Pathological Demand Avoidance ASD subtype
ABOUT THIS WEBSITE
PDA is poorly recognised as an ASD in the UK, with a postcode lottery as to whose children get NHS diagnosis. Some NHS areas recognise it and others do not. This appears to be due to lack of understanding that it is an ASD. Some families need to seek private assessment or go out-of-area.
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This means that PDA parents and their children are not getting the support and understanding they need. This flies in the face of the recognised importance of early intervention and best outcomes. https://www.gov.uk/government/publications/early-intervention-the-next-steps--2
A different type of PDA-specific support is needed, because PDA does not respond to the same behaviour management/support or educational techniques as typical ASDs and PDA behaviour can be extremely challenging, it has been described as the most severe of autism sub-types.
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So this website is not only for parents in Sussex to meet one another to discuss issues surrounding PDA, but may also help gauge how much of an issue there is with misdiagnosis and missed diagnosis of PDA locally (the area covered by Sussex Partnership NHS Foundation Trust - SPFT) and help signpost parents.
