Today, the PDA Society released a report showing that 80% of autistic adults with a PDA profile have considered taking their own lives, and 40% of children with a PDA profile have done the same. The report is based on a survey conducted by the PDA Society in May 2023, which also revealed that more than 80% of PDA people have experienced severe anxiety in the past year.
PDA stands for Pathological Demand Avoidance and is a profile on the autism spectrum. People with PDA are autistic and often have differences in social interaction, communication and sensory processing, and restrictive or repetitive behaviours. Additionally, they have a fear response to demands and use social strategies to avoid them. It is not known exactly how many PDA people there are in the UK, but it is estimated to be around 140,000.
Conventional strategies such as consistent routine and structure, firm boundaries and rewards and consequences, are not only ineffective with PDA people but can make their mental health situation worse. Elizabeth Archer, CEO of PDA Society, said: “It’s devastating that so many PDA people are considering taking their own lives. We found that 82% of PDA adults felt they needed professional support for their mental health last year, but a quarter couldn’t name a single person or service that had offered them that help. And where people had received support, they overwhelmingly talked about getting that from family and friends not professionals. PDA people struggling with their mental health deserve access to help from professionals who recognise the challenges they face and ensure that help is accessible to them.”
Evidence from the report suggests that, even with a diagnosis in place, there are very few health professionals who have access to adequate training, resources or specialists to advise on support approaches that are safe for PDA people. PDA Society are calling for wider recognition of less common presentations of autism, including PDA, and for all healthcare providers to follow a needs-based support approach with autistic adults and children.
A parent of a PDA child said: “My son had a mental health crisis for over two years – self harming, suicidal ideations and an attempt. No support was given because professionals didn’t know how to engage [with] him and their language and approaches only made things harder.”
The PDA Society is the only specialist PDA charity in the UK and is working to ensure PDA people have access to the support they need to live happy lives. Their report outlines four changes in approach that could transform PDA people’s experiences and can be read in full on their website.
Derick is an experienced reporter having held multiple senior roles for large publishers across Europe. Specialist subjects include small business and financial emerging markets.