Peer research insights into PDA
When I first came across a descripton of PDA (pathological demand
avoidance) in 2015, all its traits resonated with me strongly, bar
having obvious meltdowns and confidently bossing others around, which
the only available accounts of PDA listed as key traits.
If you're not familiar with what PDA is, there's a good description on PDA Society's website which was put together with input from adult PDAers: link
The only reference to adult PDA I could find was a Facebook support network created by Julia Daunt. I shared so many unexpected lightbulb moments of, "Wow, me too!" with fellow members that I could tell PDA was a real thing, despite being aware that many people questioned the validity of PDA as a label.
Several factors inspired me to carry out peer research:
- Lack of descriptions of adult PDA
- Lack of data backing up the multiple, quirky shared traits reported in the adult PDA Facebook group
- General lack of research into PDA in its entirety
- Controversy about whether PDA existed at all
My Big Traits study of 2016
Hands up, I'm a peer researcher, not an academic, but please bear with me because I firmly believe the
results I found have merit, and I embrace all offers to analyse them more
rigorously.
Method
As PDA people, by nature, resist being led, I undertook the peer study cautiously and invited fellow group members to suggest potential, distinct PDA traits to put into an in-group poll. 228 traits were suggested, which I put into a Google Form poll without editing any of the wordings. Members of the adult PDA group were invited to rank each of the 228 with 0 equalling "not at all" and 5 equalling "majorly" (again, I used wording suggested by fellow group members). I filtered the results to select:- all that scored an average of 3.5+ out of 5
- a small number of very unusual traits (such as making up new names for people)
- traits that considered to be PDA indicators (being late learning to talk and being dyspraxic)
The 155 traits that made it through my filter were transferred to a second Google Form pitched to:
- people relating to being PDA
- autistic people who didn't relate to being PDA
- neurotypicals
Gender identification was also recorded.
Results of my 2016 "big traits study"
The resulting spreadsheet was so daunting and complex that I sat on it for three years incapacitated by
demand avoidance-generated dread. Happily, Nottingham University Forensic Psychology PhD student, Grace Trundle, carried out a T-test analysis on some of the data in 2019:
- 90 “general” autistics and 290 PDAers.
- of 155 traits, over two thirds showed a significant difference between PDA and “general” autism.
- PDA scored higher in every instance.
This is a link to Grace’s T-test results if you’d like to see them.
I’d already run my own, less-academic analysis to compare the preliminary results by neurotype and gender.
Of 172 PDA females and 105 PDA males, scores were pretty much equal for most of the 255 traits.
Some of PDA female and male scores that were markedly different were:
- Putting off doing laundry
- Putting off bathing
- Self-motivation
- Self-medication
- Being sociable but feeling a lack depth in understanding others
- Having obsessions about people
- Not coping with being told what to do
- Being critical of others
- Several employment issues
Demand avoidance differences suggested by my "big traits study"
Unlike the other demand avoidance traits in my study, putting off laundry, bathing and motivation showed marked differences between PDA females and males.
In all cases, PDA males rated these traits more highly than the females… But all PDAers scored much more highly than “general” autistics and not autistic people.
Social relationship differences suggested by my "big traits study"
- self-medicating to reduce anxiety
- being self-conscious
- having obsessions about people
were scored higher by PDA females than PDA males.
Note that ”general” autism (of whom the majority of participants were female) scored higher for self-medication than PDA males.
Employment differences suggested by my "big traits study"
I’ve included all 5 employment traits that showed a significant difference from “general” autism rankings.
PDA males scored highest on all counts... but PDA females scored very highly too.
I think it’s extremely important for people to grasp that PDA people have greater difficulties with being employed than any other neurotype... including “general” autistics.
My own experience re my "big traits study"
Although I’m an internalising PDAer who masks my stresses and difficulties;
I scored myself very highly for all the traits we’ve seen (bar motivation and coping with deadlines):
- I put off laundry
- I severely struggle to motivate myself to bathe
- I’ve self-medicated
- I’m self-conscious
- I’ve had overwhelming people obsessions
- I’ve never been able to hold down a job and lived my life in poverty as a result
What do the results of my "big traits study" suggest about PDA and gender?
Both PDA females and males scored significantly higher for all the traits I've highlighted than “general” autistics (bar self-harming for PDA males)
- It’s the nature of PDA to struggle to carry out basic tasks (like bathing and laundry)
- PDA features high anxiety and social focus, which combine to create high social anxiety
- Social focus may become obsessive
- Work (and school) tend to be poor fits for PDAers because of they demand attendance and compliance
Adult PDA test
The results of my "big traits study" informed an informal adult PDA test I co-authored with fellow adult PDAer, Riko Ryuki.
Although the test we devised is informal, results reported by paticipants appear to predict:
- the presence of PDA
- the potential for PDA traits to occur without diagnosable autism
Masking and Social Mimicry peer study
I ran another peer study in 2018 to investigate my observation that, whilst masking was seen as a totally bad, droppable thing by the wider autism community, many PDA people – including myself – thought of it as natural and "undroppable".
I also collected data on gender – including trans – but only a very small number of non-female general autistics and non-autistic people took part.
Of 323 responses:
- 49.5% identified as PDA
- 22.6% as “general” autistic
- 27.9% as not autistic or PDA
Masking results
More than half the PDA respondents felt their masking was automatic and hard-wired.
Significant numbers of all groups identified with both conscious and automatic masking.
Social mimicry results
"General" autistic responses were about the same as for masking.
More PDA and "general" autistic people said they automatically socially mimicked than said they automatically masked.
Masking results by gender and neurotype
PDA females were least likely to think of masking as a conscious thing.
“General” autistic females were most likely to think of masking as conscious.
Both “general” autistic and PDA females were more likely to think of their masking as automatic than PDA males did.
My own experience with masking and social mimicry
- Masking & social mimicry are things I’ve always done without thinking about them.
- Seeing them on a female autism traits list drew me to seek my adult diagnosis.
- Dropping my mask is excruciatingly uncomfortable and exhausting (the opposite of current thinking that not dropping masks is exhausting!)
- I use masking and mimicry to aid my social communication.
- My daughter started masking her pain when she was tiny (we’d not encouraged this)
- She seems to have the same instinct not to stand out as I do
- She was refused an ADHD diagnosis because the assessor didn’t believe ADHD could be masked
Practical implications
Assuming a child, or adult, should drop their mask might be unhelpful:
- they might not be able to
- they might panic that their masking’s been “caught out”
- Time and energy may be wasted on an impossible goal
- they may use masking as a helpful tool
- dropping their mask may be exhausting and painful (the opposite of what many autistic people report)
Understand that PDA masking can hide all neurodivergent signs (e.g., ADHD hyperactivity:
Believe what individuals or parents tell you!
Summary
Please don’t try to change how neurodivergent people function – even if this goes against what you think is best for them...
...or if other autistic people advise you to.
One size does not fit all in autism, or any neurodivergence.
Though masking severely harms some autistics, dropping masks may actually harm others.
PDA comes with an additional “bag” of issues, including:
- avoidance of everyday tasks (like bathing)
- social anxiety
- unique stresses with being employed
Thank you!
ReplyDeleteThis is incredibly insightful generally re my PDA child and on a personal level. I have each of the traits you describe, including going to lengths such as jumping in the ocean to avoid bathing and buying new clothes to avoid showering! And have curated very specific work arrangements that give me almost full autonomy and flexibility, plus massive chunks of leave without pay throughout my life. It has been a privilege to have been able to survive and find these arrangements, and a massive struggle along the way. I would look at people who just ‘went to work’, and ‘stayed in a job’, or went from one to another without months off in between and wondered how?!?! But when I learned about PDA I thought that couldn’t be me bc I wasn’t anything near autistic (I thought). This makes me see I probably do but I mask automatically as it feels safe, as opposed to my other autistic friends who talk about learning to mask or being able to unmask. Thank you so much for this, it helps me enormously.
ReplyDeleteI've emailed you :)
DeleteThis was really informative and resonated with me alot. Thanks so much for sharing and for all the stuff you do to promote awareness of PDA as without your work I would be even more lost. 😊
ReplyDeleteMy 12 year old daughter is being evaluated for PDA and what her therapist called high functioning autism. I understand that can be offensive to others to say it like that but I wanted you to know what her therapist called it? This is all new to us and it’s been a hard journey and it seems to be getting more difficult. She will be 13 years old in august. Last November she began her period. Shortly after that occurred, she began swearing at us with such vulgarity when she loses any autonomy or becomes very angry. She calls us names, talks down to us and has become verbally abusive. Is the swearing normal for those who are PDA or autistic? We have no idea how to discipline when it comes to that? Because if this is indeed a nervous system disorder and she can’t control the swearing, how can we discipline something she can’t control. I have tremendous patience with her more so than anyone else in our family. Her dad has shut down, he is not helping parent so I carry the brunt and also the weight of it. I’ve become sad and overwhelmed by the horrible things my daughter has said when she becomes angry. I usually can move past it, but the insults and verbal assaults have been awful especially days before she begins a period. I just would like to know if the swearing is normal for someone who has been diagnosed with PDA or autism.
ReplyDeleteHi, what you're describing sounds like meltdown to me, rather than anger. When I meltdown, I don't get physically aggressive, but i do tend to swear and say horrible things to people I love. I hate myself as I say these things, but I'm not actually in control. It's lile I've been possessed by a demon. It's traumatic and embarrassing and terrifying for me. So, it can't be disciplined, I don't think. What can be done is to enable extended quiet, low demand time for your daughter so she can recharge her brain and avoid the overload that leads to meltdown. We PDAers seem to need loads more quiet time than other kids tend to. Screentime, though frowned upon, can actually be very beneficial for us, I think. Also, if your daughter starts saying horrible, angry-sounding things to you, keep on following your instinct about not taking it personally (I know this can be hard); don't make a big deal of it and keep thinhs calm and not spotlighting her
DeleteI'm displaying as anonymous in my comment above.
DeleteI just want to thank Sally Cat and all her colleagues for such an in-depth study into PDA. You are such a trailblazer and an inspiration to countless people! I am so happy to have found your page and to have learned so much about myself and to be in included and acknowledged as a PDA’er despite not being autistic. A person can still have these traits and high anxieties around demands due a whole number of factors. I do consider myself neurodivergent because of this and my GAD. Thank you again for your amazing work.
ReplyDeleteHello and thank you. I feel a need to say that, whilst I do think that the PDA neurotype (like ADHD) may show up without diagnosable autism, I'm also of the opinion that the PDA cannot be caused by a range of factors. PDA is, in my belief, an inborn neurological difference (like autism, ADHD, dyslexia, etc). Yes, multiple factors can and do cause demand avoidance, but this is not – as I understand it – PDA type demand avoidance. Please check out this blogpost I wrote a couple of years ago https://www.facebook.com/SallyCatPDA/posts/how-pda-avoidance-is-different-from-other-types-of-avoidance-autistic-people-may/323608892659867/
DeleteI *just* started looking into dorsal vagal shutdown because I've become so incredibly frustrated with my inability to get on top of work/my life and coming across your site is making me reevaluate so many things... I've had severe Crohn's Disease since I was 8 with multiple surgeries/medical trauma, then debilitating clinical depression throughout most of my 20's and often have suffered from what I've always referred to as my brain "drugging" me into an almost comatose state if I encounter a task or series of tasks I need to do. It literally feels like someone has dosed me with morphine and I fall into a "hard sleep" without wanting to. I absolutely automatically lie to avoid tasks and have only recently realized I was doing it. I thought maybe I had ADHD and the symptoms usually fit but I had yet to come across anyone talking about my lying and "hard sleep" issues related to ADHD. I was *very* socially anxious as a child to the point of physical pain and only trained myself out of it in my 20s by mimicking my more extroverted friends (once I got them) and watching hours upon hours of YouTube videos on how to act confident and read people. I assumed I was bad at socializing because I was under socialized from being isolated from people by my Crohn's, but now I'm wondering if it's more connected to what you're talking about here on the site. Sorry for the rant, having a bit of "wtf" moment here. Please tell me there are ways to mitigate the symptoms?
ReplyDeleteHello, what you describe might be PDA-type avoidance causing a flop adrenal response (falling into hard sleep) and fib adrenal response. As I understand it, ADHD – which seems to very frequently co-occur with PDA – can cause us to find forcing our focus onto tasks actually painful, whereas PDA is more about our brain rejecting the task at a deep level. I think maybe the question is: do you feel an overwhelming need to avoid the tasks that result in you going intio hard sleep? As for mitigating symptoms, I've found a positive way forward through accepting the unchangeable and setting myself goals accordingly. My demand avoidance won't go away, but I can arrange my life to minimise how many "demands" (daily tasks, etc) I expect myself to accomplish and accepting that I need loads of recharge time after tackling these demands (regardless of how un-exhausting other people find them)
DeleteHi! This is really fascinating data! I am suspected PDA myself and also have done a lot of work analyzing multivariate data, which this dataset is (multiple categories of people varying along multiple scales). Would you be willing to share some version of your data? Doing a multivariate analysis can let you basically visualize all the biggest trends at once overlaid on top of each other, rather than visually hopping back and forth between bar chart profiles. I think it could be really cool for understanding this more deeply! My background in this analysis is largely using it for sensory perception data, which is sort of an experimental psychology-adjacent (academically I focused on flavor, taste, and smell). Anyways, let me know if you’d be into that or want to discuss any further.
ReplyDeleteThanks for this great post, i find it very interesting and very well thought out and put together. I look forward to reading your work in the future.
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Hi there, I’m the mom of an recently diagnosed autistic teenage girl, who, I think, has PDA. I live in Canada where PDA is not yet even recognized, and am struggling with how to parent, guide and help my 16 yo. I do t want to traumatize them more than school already does. It’s extremely hard for them to get to school and do the work, and I can only look on and wonder why it is so hard… is there any positive outcome in adulthood? Can PDA’ers find meaningful employment? I’m not sure how to support them.
ReplyDeleteI am an adult and finally (in my 40's) found that having my own business, with a manager to deal with the employees, is the best thing for me. I can suggest to teach her basic budgeting and learn to always put some money (save a little bit of Everything earned) into a separate account (or a shoebox), so the avoidance doesn't catch up to her too much that way. Best of luck.
DeleteI totally relate to PDA! Reading the experiences of young adults who had been diagnosed as PDA was how I came to realize that the pattern/experiences of those classified as autistic were relevant to me. This has been an incredible blossoming of my sense of self and ability to relate to others (both NT and us). I am also a "word person" (one of the ways my autistic traits express). So: what "PDA" means to me is: Pro-social Domination Aversion. It's only a "pathology" in a pathologically authoritarian and de-humanizing society based on social dominance hierarchies that harm are neurologically functioning and make us sick (that's what Freud meant by his book _Civilization and its Discontents_, he concluded that self-styled 'civilization' caused neuroses -- in everyone: that 'civilization' itself is a disease process by its nature it requires us to be neurotic). This site describes how autistic folk are unable to derive pleasure from dominating others (I totally relate! I had no idea this was a pattern I share with others!). This is profoundly pro-social. So I no longer relate to PDA as a pathology. It's a pro-social trait that's made disabling by an anti-humane dis-eased society. Here's the site I mentioned:
ReplyDeletehttps://autcollab.org/2018/04/09/autistic-cognition-decoded-for-earthlings/
What you're describing is autistic avoidance, not PDA. People who aren't PDA repeatedly make this mistake because PDA is an invisible difference they can neither see in others, nor ever experience themselves. Your theories may be spot on for general autsm, but please take time to listen to people who do identify with PDA before getting carried away with neat-seeming theories that match your own experience of the world. Thank you
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