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PDA From An Adult’s Perspective

As society becomes more aware of PDA – pathological demand avoidance – as a different presentation of autism, some parents are gradually realising that the description of the condition matches their own children’s behaviour. In a similar way, a number of adults are recognising themselves in the list of PDA traits.

Author Sally Cat was diagnosed with autism as an adult ten years ago but found it difficult to identify with some of the ‘classic’ autistic symptoms. “I’d joined an autistic adults’ forum, expecting to find connection, but instead, felt as alienated as I always had in life,” she explains. “My fellow members expressed markedly different views and feelings from my own.”

“For example, I’d come across a program that taught social interaction skills to adult autistic people. Though I’d been hoping to find funding to do the course, other autistic people on the forum thought badly of it. This confused me because I’d always had a drive to learn how to fit in socially.”

PDA – A More Accurate Description

When Sally then came across a description of PDA, she recognised the condition as a much better match for her difficulties and pursued a medical opinion. “It was an indescribable relief to finally gain my PDA diagnosis,” she comments. “I’d fought for so long, and so hard, to gain it. It was so validating.”

Although the diagnosis has helped her to understand herself, she still finds life exhausting. Her demand avoidance, she says, has constantly interfered with her ability to earn a living as even the most relaxed working environment makes her want to run away. Even being self-employed feels like an insurmountable demand.

Overwhelming Anxiety

But it’s the social anxiety that comes with the condition that Sally has found most challenging. “Joblessness can be forgotten on a day-to-day basis,” she elaborates. “We can get on with things and, for example, enjoy seeing a nice sunset. But high-level social anxiety can’t be ignored. It worms into your soul and screams for constant attention so you can’t enjoy anything at all. Social failures and perceived rejection just keep on gnawing away at you so you have no self-esteem at all.”

Highlighting the Challenges of Adult PDA

Sally has been writing a popular blog on living with PDA for a few years and in 2018 her book, ‘PDA By PDAers – From Anxiety and Avoidance to Masking and Meltdowns’ was published by Jessica Kingsley publishers. The book is a compilation of the experiences of herself and other PDA adults.

Part of the reason for producing the book, she says, is to help the rest of the world to understand that PDA isn’t a choice. “It’s just always been there with us, like breathing, and it constantly tells us to avoid things because, well, that’s just what it does. It tells us to avoid things we actually would want to do (like going on a nice outing) and simple things that would make us feel better (like picking up a tasty biscuit from a plate right in front of us when we’re very hungry).”

Although this may sound quirky, Sally points out, it can sometimes have serious consequences. “There’s a lot of intensely difficult stuff that comes with the PDA package,” she continues. “So many of us are desperately depressed and lonely, and/or living in poverty, and/or unable to access vital health care because of our demand avoidance. I’ve talked fellow PDA adults down from taking their own lives because their depression had become so total and all-consuming. I’ve been there myself.”

People with PDA are Capable and Creative

Despite this, there are positives to PDA she maintains. “Given support, respect and recognition, we can, and do, achieve incredible things. We’re a very creative, caring and lateral thinking bunch of people. We can contribute great things to the world if the world is flexible in return, and makes space for us, as we are. We’ll never be cogs in the machine, but we can invent whole new machines (so long as no one demands that we do!)”

Families of PDA children can help simply by allowing their sons or daughters to be who they are, Sally says, without trying to ‘fix’ them.

“Viewing PDA kids as ‘nightmares’ who are ruining their parents’ lives is not a healthy or productive mindset and it will escalate family stress,” she concludes. “PDA kids are sensitive to how parents, and others, feel about them, so, if a parent has the attitude that their child is the bane of their life, even if they don’t say so out loud, the child will pick that up and feel panic and rejection.”

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