Today, the PDA Society released a report revealing that more than 80% of autistic adults with a PDA profile have considered taking their own lives, while 40% of children with such a profile also have similar thoughts. The survey, conducted in May of this year, also showed that 82% of adults and 87% of children have experienced severe anxiety within the past year.
PDA (Pathological Demand Avoidance) is an autism spectrum profile, meaning those with it have differences in social interaction, communication, and sensory processing, as well as restrictive or repetitive behaviours. While it is unknown how many PDA-diagnosed individuals are in the UK, it is estimated that as many as 140,000 people could have the profile.
Elizabeth Archer, CEO of PDA Society, shared her thoughts on the survey results: “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.”
Archer went on to emphasize the urgency of the issue: “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. Our report outlines four changes in approach that could transform PDA people’s experiences, both of stressors that contribute to this crisis and of seeking help. This situation is not inevitable, with fair access to help and support PDA people can live happy lives.”
The report further revealed 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 now calling for wider recognition of less common presentations of autism, such as PDA, as well as for all healthcare providers to follow a needs-based support approach with autistic adults and children. The charity is the only specialist PDA charity in the UK and is committed to providing high quality, trustworthy information and support to those affected.
A parent of a PDA child shared their experience: “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. I had to take him out from the school for his safety. He is 10 years old. He acted completely different at home and in the community from at school. At home I use PDA approaches and he’s fine, not an angel but he doesn’t hurt anybody. He’s so violent at school. At eight years old, he started really harming others, pulling hair and biting on a daily basis. And in the meetings they would ask me how I dealt with that. And I told them I managed behaviour differently at home and it worked but they just didn’t listen. He started to be not himself. The severity of harming others and himself was just unbelievable. And because he had severe speech and language delay a lot of time, people don’t understand what he’s saying, and of course he gets frustrated and extra anxiety on top of his PDA. Every morning for 6 months he was screaming with distress about going into school. I went to CAMHS. They tried medications on him. Meanwhile I felt my son was unsafe at school, he had bruises, really heavy bruises on his back, it turned out that school had started restraining him. I can’t understand how this was an easier choice for them to make than trying the flexible approaches that worked at home. I took him out of school more than six months now, he’s at home with me. In that time, I’ve not had one incident with him. He’s been released from CAHMS – I said to them so you’ve had my little boy on your list for three years, you’ve tried to medicate him and it turns out all I had to do was take him out of a school who won’t treat him the way he needs to be treated. It’s ridiculous – all his distress, the self-harm – that wasn’t about his PDA. It was about his teachers not being prepared to try a different approach with him.”
The PDA Society released a report today uncovering the alarming mental health crisis that PDA people are facing. The survey revealed that more than 80% of autistic adults with a PDA profile have considered taking their own lives, while 40% of children with such a profile