Today is PDA Awareness Day (which aims to raise awareness of Pathological Demand Avoidance syndrome, an autism spectrum condition, rather than Public Displays of Affection). To mark it, and to follow on from yesterday’s interview with autism specialist Ruth Fidler, who was featured on last night’s provocatively-titled Channel 4 documentary Born Naughty?, today I’m posting an interview with PDA activist Julia Daunt. Julia runs several online support groups for people with PDA and is currently co-authoring a book about the condition with Ruth, which is due out from Jessica Kingsley Publishing in early 2017.
Why is it important that PDA is distinctly recognised in addition to a general autism spectrum diagnosis?
People are so quick to make sweeping statements about things they know nothing about or that they are afraid of — this needs to change. This will only happen once PDA is recognised as an autism spectrum condition in its own right. Once people understand this then help won’t be so unreachable for so many. PDA needs to be taken seriously and not dismissed out of hand.
Do you think, as someone with PDA, that you have the same social difficulties as those with other autism conditions?
I don’t think I have exactly the same difficulties but there are certainly areas of overlap. For example I have problems understanding tone of voice and jokes. Sometimes it’s so difficult to know whether people are being mean or are just making a joke. I don’t have issues per se, but I do have to remind myself of how it’s meant to be done, such as meeting new people for the first time, and shaking hands, introducing people with me and waiting until they have finished speaking before I do. None of this comes naturally to me. I used to have massive problems with the non-verbal side of things as a child, but not so much as an adult. This side of things is pretty normal now, unless I’m extremely anxious at the time.
Do you experience sensory differences?
I do have some sensory issues, such as heightened hearing, sense of smell and taste; really bright lights hurt my eyes. I can’t bear some textures on my skin and things like tight socks drive me insane. I’m also very “touchy-feely” and need a lot of physical contact, such as cuddles, gentle tickles before bed and hand-holding. I crave it.
Where do you see those with PDA making the most significant contributions to society?
I don’t think that I’ll ever be able to work in the traditional sense of the word, but that doesn’t mean that I cannot contribute or even make a difference somehow. The online support groups that I’ve helped start and run have been a lifeline for me and now are a lifeline for many others. It’s a really humbling experience. My blog has also given me so much.
As far as others with PDA go, many do enjoy employment and as far as I’m concerned if they are given the right support early enough then I don’t see why many others can’t do the same. I see jobs with flexible hours, creative roles and small teams being ideal. Perhaps even running a business might be a good option for some, but whatever path we chose we will more than likely need support along the way. It doesn’t have to be all doom and gloom, unless we choose that.
When it comes to relaying information about specific events, it’s noted that young people with PDA often exaggerate or dive into flights of fancy. Can you provide any insight into this?
I can completely relate to the “flights of fancy” bit, more so as a child, but also slightly as an adult. I remember once after the holidays I returned to school and announced to the headteacher that I had been starved over Christmas. This was completely untrue, but I rambled on and on with a very in-depth tale of woe. What more than likely happened was my mum had probably, at some point, said: “no you can’t have another chocolate” or something similar. I do remember this, but I can’t be sure as to why I said it. What I do know is that I never sat down and concocted tales to tell, they just sort of happened. To me, I was telling the truth. It’s more like the line between fact and fiction blurs, or in some cases didn’t even exist. Like an extreme version of role-play if you will. As an adult it’s a very different story. Sometimes I ramble on to Paul, my partner, about a fictitious event, such as when I win the lottery even though I don’t play it… Now it’s like a de-stresser more than anything. This not knowing/understanding fact or fiction is thankfully a side of PDA that I’m more than happy has remained in my childhood.
Can you talk a little about how you feel about praise and appreciation?
I hate praise. I don’t mind a simple thank you or indirect praise like a card or flowers but I can’t cope with too much over-the-top praise, like clapping, cheering, comments like “you’re wonderful” and “you’re the best” — I find it too much. It makes me feel so uncomfortable. Perhaps it’s a 50/50 split between low self-esteem and PDA as to why I don’t like it.
You’ve mentioned before that self-awareness, love and support are the only useful ‘interventions’ you’ve had.
Self-awareness really is the key. If you understand why you do something or act a certain way then it kind of takes the pressure off. You no longer feel confused or like a freak. It answers so many questions and allows you the time and space to look deeper and learn ways of coping and, so in turn, modify some behaviours. For me empathy was always there, but was masked by my behaviours. It wasn’t until I fully understood PDA and how it relates to me that I was able to truly express my empathy.
When do you feel relaxed or calm, or are those words anathema to you?
Nowadays I feel mostly calm and relaxed at home. To me it is so important that I have control over this. Home is where I know I’m safe and where I know that I can let go and just be me without fear of judgement or retaliations. Although I’m happier than I’ve ever been before, the outside world can still be a very cruel place. People are far too quick to judge. It’s only when something happens or I have to go out that my anxiety rises. I don’t have a lot of time to indulge in hobbies with all the groups I’m a part of now, and the blog and book also take a fair amount of time, but I enjoy watching TV, listening to music, writing, reading, cooking/baking and paper crafts. One of the saddest parts of PDA is the avoidance of the things that I enjoy, like hobbies. Sometimes the demand is just too great for me and I can’t do it.
You can read more about Julia’s own experiences of living with PDA here. Learn more about the condition here, here and here. Or visit the PDA Society website. I will add more interviews to Medium over the coming days. If you’d like to know more, Steph Curtis has 13 recent case studies posted on her blog.