PDA Perth WA Parent Community and Support Page on Facebook was created to support Perth-based parents of autistic children and young adults with a “PDA profile”. PDA is an atypical presentation of autism, described as having an anxiety-based need for control, resulting in extreme resistance to, and avoidance of, everyday activities and ordinary demands of life. Those with PDA present very differently to others diagnosed with autism – frequently showing much greater eye contact and social skills, extreme mood swings/emotional lability/dysregulation, obsessive behaviours, comfort in role play/fantasy, and tend not to respond to conventional approaches to parenting or teaching. Conventional approaches based on firm boundaries and the use of rewards, consequences and praise, or approaches often recommended for autistic people (such as routine, structure and predictability), are often extremely ineffective and even extremely counter-productive for those with a PDA profile. This makes parenting and raising our PDA-ers extraordinarily challenging, sometimes to the point where we are unable to even leave the house for days, weeks or months. Most parents of autistic kids and young adults with a PDA profile experience anxiety or depression and chronic severe stress.
PDA Perth was set up to give and receive peer support to/from each other; share resources (including research articles/books/workshops/seminars/websites and webinars); connect daily (online) and monthly (face to face) with other parents who completely understand our challenges and significant daily stress; have a forum for questions, shared knowledge and collective wisdom; link members with community agencies and other support services (including avenues for funding, concessions available, PDA-aware health professionals, respite options, training providers, NDIS services, etc); generate documents to educate our children’s treating health professionals and educators on strategies which can be adopted more successfully with our PDA-ers; participate in advocacy and lobbying for better support for our kids in schools and in life. We have grown from one member in October 2022 to 2075 members in July 2024 and growing daily!