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