Thursday, March 23, 2023

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


Friday, February 10, 2023

The Polyvagal Theory and PDA

This blog article explores polyvagal theory in conjunction with PDA (pathological demand avoidance), and includes definitions for readers who aren't unfamiliar with terms used. 

It explores how polyvagal theory can explain extreme demand avoidance, but not all of PDA. Those who are familiar with PDA, may have heard mentions of polyvagal theory in relation to it, but have struggled to make sense of it. This was my starting point when I came to write this. I felt polyvagal theory was something I *should* know, but felt helplessly demand avoidant against reading up on (such is the nature of avoidance of the PDA kind).

Thankfully, my desire to understand polyvagal theory eventually out-weighed my avoidance, and I approached Libby Hill of Smalltalk Speech and Language Therapy who specialises in PDA, situational mustism and polyvagal theory. More thankfully still, she agreed to co-author this article. It's an honour to collaborate with her because it was she who first alerted me to PDA in a series called Born Naughty! that aired on UK's Channel 4 in 2015. It's thanks to Libby, and the rest of the TV show's team, that many adults had lightbulb moments that PDA might, at last, explain their lifelong, misfit quirkiness. Some of us have gone on to advocate for PDA so awareness of our little-charted, invisible differences reaches even more people. I'm one of these, as is Riko Ryuki, who's blog you can view here.

Definitions

Autonomic ladder (polyvagal theory): a spectrum of nervous system states (with feeling safe and good at the top). 

Dorsal vagal (polyvagal theory): a large, primitive part of the vagus nerve that controls body functions like digestion. 

EDA (extreme demand avoidance): an alternative name put forward for PDA (pathological demand avoidance) in response to widespread discomfort with the term “pathological” which many consider derogatory. A champion of the term EDA was Liz O’Nions who developed a scale to measure PDA named the EDAq. EDA, however, may not fully describe PDA. 

Fight / Flight / Freeze, etc: human and animal adrenaline responses which evolved millions of years ago in the animal as defence strategies to deal with threats. 

Neuroception (polyvagal theory): our inbuilt threat detection system. 

PDA (pathological demand avoidance):
    i. a distinct neurotype (brain type) that’s present from birth and is characterised by high anxiety; high personal control need; interest in people (which may become obsessive); fondness of novelty; strong, changeable emotions; using creative and/or social strategies to avoid demands; likelihood of being drawn to fantasy and role-play. PDA can be argued to fit the diagnostic criteria of the autism spectrum because it’s a life-long neurological condition impacting social communication and flexibility of thought.

  ii. a specific form of demand avoidance that gives its name to the PDA neurotype. 

Polyvagal theory: a model, put forward by Stephen Porges in 1994, of tiered nervous system states, in which the ventral vagus system operates when all is well. Sustained trauma causes the ventral vagal to shutdown and the sympathetic nervous and dorsal vagal systems to become dominant (see below for a more detailed description). 

Sympathetic nervous system (polyvagal theory): a network of nerves that are primed for the fight / fight / freeze reaction. 

Ventral vagal (polyvagal theory): a nervous system that inhibits fight / flight / freeze via social engagement and self-soothing.


Diagram showing the different polyvagal states that are described in the text

Polyvagal theory

According to Libby, if we look at the work of Deb Dana – who works a lot with Stephen Porges (the person who developed polyvagal theory) – when we're good:

  • We're operating at the top of the autonomic ladder
  • Our ventral vagal nerve is in control
  • We're relaxed
  • Can see possibilities
  • Move about the world in ease


At the same time:

  • Our sympathetic nervous system is buzzing along regulating our blood flow and heart rate
  • Our dorsal vagal system is keeping our body digesting, resting and restoring.

This is how it's supposed to work.

Depiction of things being good when ventral vagal nerve is control, and bad when it isn't


But, if our neuroception detects threat:

  • The ventral vagal shuts down.
  • Our sympathetic nervous system takes over.

Instead of the good things listed above, we:

  • Feel unease
  • Lose cognitive abilities
  • Disconnect socially
  • Mobilise for fight, flight or freeze

And our dorsal vagal system:

  • Causes digestion imbalance


If both the ventral vagal and sympathetic nervous system shutdown, the dorsal vagal takes over completely and digestive/system responses dominate:


If the dorsal vagal remains dominant, long-term issues may develop as the result of the body being in crisis for far too long (in a nervous system state it shouldn't be in). Possible health impacts are:


How polyvagal theory connects to PDA

PDA people have an essential need for personal control.


Libby explains that, according to polyvagal theory

“Tolerance and control decrease as demands and anxiety increase. This can happen for anyone, but PDA people seem to be naturally primed for it.”


Avoidance of the PDA kind is traditionally described as anxiety led need for control. This equation has, however, been brought into question by PDA people, such as myself and fellow blogger, Riko Ryuki, who say that, whilst anxiety is certainly a key trait of the PDA neurotype, our avoidance can trigger when we’re not anxious. One thing that everyone seems to agree with is that much, much more research is needed before PDA can be understood

Regardless of how anxiety and avoidance truly interact, whenever a PDA person perceives something as a demand, their inherent avoidance drive gets triggered. In polyvagal terms, the perceived demand shuts down their ventral vagus and activates their sympathetic nervous system, causing a feeling of intense ill-ease and mobilising us for fight / flight / freeze, etc adrenaline responses. As ever, more research is needed, but there’s a growing body of PDA community members who believe additional “F” responses may trigger in place of fight / flight / freeze. There’s more detail in this blogpost but, in brief, these are thought to include fawn (people pleasing), funster (playing the clown), fib (telling lies to escape being caught out) and flop (fainting or otherwise collapsing).

PDA people’s proneness to adrenaline responses can, therefore, be explained via the polyvagal theory as demands causing our sympathetic nervous system to take over.

Autism and demand avoidance

Libby says:

“All autistic people can avoid demands if their neuroception detects stressors so their sympathetic nervous system takes over. This leads to avoidant reactions like  withdrawal, shutdown and escape.”


Whilst all people could respond similarly to situations they find stressful or difficult, autistic – and other neurodivergent people – are likely to be impacted by a greater number of things, and/or be more sensitive to common stressors. E.g.:

  • Situations which trigger anxiety
  • Sensory overload
  • Disrupted routine
  • Transition difficulties
  • Things of no personal interest

Libby’s view is that when a person, autistic or not, is more avoidant than the social norm, this is EDA (extreme demand avoidance). This may seem nonsensical because the term EDA was put forward as an alternative to PDA. However, there seems to be a crucial difference, and EDA and PDA appear not to be the same thing (!) In Libby’s view, the EDAq that Liz O'nions developed – which is the only scale so far available to measure PDA – doesn't measure PDA at all; only measures demand avoidance.

EDA versus PDA

PDA people can, and do, avoid things for the reasons listed above (sensory overload, etc), but we have specific PDA-type avoidance too. Libby thinks it’s extremely difficult for people who aren’t PDA to grasp what PDA-type avoidance is. After all, it’s invisible. Libby says that a description I once gave of my PDA avoidance being like breathing strongly resonated with her and has remained in her mind.

Libby draws attention to Dr Judy Eaton's work of 2021, which suggests that specific PDA-type avoidance is rooted in avoiding one's own demands. 

This means that people can work as much as they can to reduce demands around us, but we PDA people will still be demand avoidant. Everyday demands might be avoided just because they're demands, but it's the expectation that something *should* be done that results in the inability to do it.

To put it another way, PDA-type avoidance is triggered by one's own expectations, or other people's expectations, which might not even be explicit; it could have just been implied.

So, for people with extreme demand avoidance, if you meet their needs, their demand avoidance goes away. But, with PDA, it keeps on going, unstoppably.

Whilst extreme demand avoidance is logical, as we’ve seen, PDA-type avoidance is very hard for someone without PDA to understand.

It should also be borne in mind that PDA, as a neurotype, entails a cluster of additional traits, such as social focus and propensity for fantasy & role-play. This will be the subject of a follow up blog article.
Libby believes that autism plus demand avoidance is actually very common, but PDA is, relatively, really rare.

Internalised PDA and my own thoughts on the EDAq

It’s maybe worth mentioning that a growing number of adult PDAers, such as me, have been coming forward to say that we match all the traits associated with the PDA neurotype, but internalise our stress, meltdowns and avoidance strategies, etc so that the existence of our PDA is effectively hidden (you can read more in a blogpost I wrote on the subject). I was concerned that the EDAq might not pick up internalised PDA, because it includes things like telling classmates what to do and social interaction having to be on “their own terms”. Whilst we internalisers might be happy if these things happened for us, we’ll be very unlikely to externalise our feelings, and be more likely to feel depressed and alienated because we don’t comfortably fit in socially.

I contacted Liz O’nions in 2018 to ask if her EDAq scores internalised presentations of PDA, and she confirmed that it doesn’t. 

Another issue I have with the EDAq is that much of its wording is riddled with observer assumptions which make it a minefield for actually PDA people to answer honestly and still score enough to be, in the scale’s words, “identified [as] those at high risk of showing features of Extreme Demand Avoidance”.  

Examples are: 

  • “shows little shame or embarrassment (e.g. might throw a tantrum in public and not be embarrassed)” 
  • “likes to be told s/he has done a good job”, the latter giving a negative score for answering yes. 
This is problematic because the reality of PDA is that, whilst we tend to find general praise squirmy, we often crave specific praise for things we’ve done.

As for Libby’s assertion that it doesn’t score PDA at all, my internal jury is out. Its criteria list does contain things that apply to the broader PDA neurotype, such as “invents fantasy worlds or games and acts them out” and “uses outrageous or shocking behaviour to get out of doing something”, which aren’t traits associated with autism in general. However, I agree that the EDAq fails to encapsulate what PDA actually is. It touches on it, but misses much. 

Could a non-PDA person score highly enough in the EDAq to be “identified [as] those at high risk of showing features of Extreme Demand Avoidance”? Possibly, but I can’t say for sure. As ever, more research is needed. What I can confidently say is that the wording of the EDAq will miss a lot of actual PDA.

Depiction of the polyvagal system describing extreme demand avoidance, but not PDA

Why polyvagal theory accounts for EDA but not all of PDA

We’ve seen that, according to polyvagal theory, perceived demands trigger PDA people’s neuroception so our ventral vagal shuts down, and our sympathetic nervous system & dorsal vagal take over, leading us to be fight / flight / freeze primed and prone to developing chronic health issues, like irritable bowel syndrome.

We’ve also seen that EDA and PDA are different entities. EDA, aka extreme demand avoidance, can be experienced by anyone and is alleviated if needs are met so – in polyvagal terms – the ventral vagal nerve takes over running things.

However, what polyvagal theory doesn’t explain is the cause of PDA-type avoidance. Its neurological origins and mechanics remain a mystery: why are we specifically triggered by things that we perceive as a demand?

Neither does polyvagal theory explain why removing the feeling of “demand” from something reduces our avoidance. 

If PDA brains simply detect more threats than non-PDA brains, why does it matter if things do, or don’t, feel like demands? Surely, we’d feel just as threatened by the idea of going somewhere if we didn’t feel we had to? If the presence of demand makes no difference, then this is surely extreme demand avoidance, not PDA?

I think this is a crucial distinction. Unless the specific, irrational nature of PDA-type avoidance is understood, people won’t credit PDA’s existence, and we sorely need our existence credited.

Need for differential diagnosis

Libby is very concerned that, if diagnoses don't distinguish between EDA and PDA, we risk making the issue worse. 

For example, if we were to use typical autism strategies for a PDA child, that would be dreadful. On the other hand, for children with extreme demand avoidance who are autistic, using PDA strategies could make things worse, because we wouldn't be giving them the structure or routine that they need to make them feel safer.

Correct diagnosis clarifies which approaches to use and should, in the ideal world, allow access to services. The key thing though is highlighting the radically different management strategies for school, and also home. PDA, after all, throws most parenting on its head. People need to grasp that, with PDA, it's "can't not won't".

This high need for differential diagnosis has led Libby and nine other professionals involved with PDA – including Phil Christie, Judy Eaton and Gloria Dura-Vila – to collaborate to put together a formulation to present to the diagnostic manuals. However, after two years, they've realised they're still far from achieving this goal. 

The more they've looked at tightening the definition of PDA and making it more specific, the more they've realised it's not straightforward. 

The presence of PDA is something they can feel, but this isn't tangible enough to put down on paper; it's not scientific; you can't put it in a manual.

For robust diagnosis – speaking of children – they need to be seen by more than one professional and in more than one situation. It's about listening and observing and taking everything in; not just what's said and done, but looking behind that. ADOS and DISCO (more info) rely on parental reports, which is insufficient to distinguish between EDA and PDA. The Coventry grid is a good tool, especially the version of it Judy Eaton amended to look at PDA. 

Another issue is that clinicians' knowledge varies (wildly). Many, for example, have no idea that there's a difference between EDA and PDA – and this is for ones who accept that PDA exists at all.

It's really early days and we've got to build on what we know.

Sometimes, if we say they need a bespoke package, this takes away the need to work out if it's EDA or PDA.

The team will be coming back to their collaborative mission to pin PDA down into a definition diagnostic manuals can accept.




 


Saturday, November 12, 2022

Internalised PDA

What do we mean by internalised and externalised PDA?

To understand what internalised and externalised PDA are, I think it’s first necessary to understand what PDA is.

PDA stands for both a specific type of irrational, “pathological” type of avoidance, and the distinct neurotype it belongs to.

PDA-style avoidance is only experienced by people fitting the PDA neurotype.

PDA as a neurotype involves more traits than the irrational avoidance it’s named for:

~ massive need for personal control
~ ultra-high inborn anxiety
~ interest in fantasy and role-play
~ using social strategies to avoid every day demands (like having to put shoes on)
~ enjoying novelty

PDA, as a neurotype, hasn’t been studied much. The huge majority of existing studies have focused on children with obvious traits:

I.E., children who’ve kicked and screamed publicly enough for researchers to notice them. 

But there are more PDAers than children who’ve stood out as obviously difficult. Many of us, for example, are adults. And many of us never kicked and screamed to begin with: we internalise our stress so no one notices  its existence.

What people may notice, if they’re paying close attention, is our failure to socially gel, or, maybe, quiet failure to perform as expected.

Externalising PDAers express their PDA, and other feelings, issues, etc, openly, but internalisers swallow their feelings and issues inside so they’re hidden to observers. This can manifest in school children as compliance and/or muteness.

All the stresses and self-generated restrictions of PDA are in operation, but they’ve been internalised so they’re not blasted out for observers to easily see.

Internalising PDA kids – like me as a child – still seek to avoid things like school, but use hidden means to do so.

I avoided school using “sneaky” methods:

pretending I was sick

forging my parents’ handwriting to write sick notes after playing truant



Why is internalised PDA harder to spot?


Externalising PDAers are the ones who’ve been studied and classified because they’re behaviour and avoidance are noticeable.

However, although externalising PDAers avoid demands in obvious ways and have visible meltdowns, internalisers are just as “PDA”.

The difference is that we contain our triggered reactions so their impact is hidden to observers.

Our internalising drive is very strong (otherwise, why would we bother?)

I believe it’s inborn.




Uncharted continent

There’s been very, very little written about internalised PDA. Hardly anyone has ever noticed us. That’s how good we are at hiding our differences!

So much of internalised PDA is unexplored.I think of it as an uncharted continent. The type of landmass which antique maps label with “here be dragons”

I can only talk from my experience:

~ coming to understand my own, complicated self
~ my daughter (equally complicated)
~ what fellow internalising PDAers have said
~ what parents of internalising PDAers have said



Denying pain

My daughter, Millie, denied being in pain from the moment she possessed enough communication ability to do so – about age one.

I learnt to calmly hold my arms open for her without making a big issue out of it or commenting on her injury so she could come to me without feeling exposed.

This wasn’t because me or her dad had ever told her to hide her pain. Not at all.

I intuitively sensed her hide-reaction was instinctive.

The internalising drive seems to be innate. I have it myself.



Undroppable masks?

Autistic people often talk about dropping masks as if this is good and possible.

It’s really not good or easy for me. Trying to drop my mask takes huge effort and feels traumatic!

I had to drop my mask recently to navigate a disability benefit assessment. I knew I’d score badly if I hid my anxiety, but revealing it felt awful. Like being naked in a supermarket or something! My personal comfort lies in masking my vulnerability. Pausing my mask was hard work and unpleasant.

My whole instinct is to mask.

I believe this is natural for me and not something I should change to make me “better off”.

I believe we internalising PDAers pit our wits to hide what’s going on inside us.

We’ll chuck massive amounts of energy and learnt skills into doing this, because we’ve been ordered to, but because our brains tell us to.

This might not match popular theories, but it’s what I’ve observed going on in myself and in my daughter. And what many other fellow PDAers, and parents of PDAers, have observed too.



Seeing us demands effort

Parents, carers, educators, etc, are often over-stretched and tired and without any spare energy.

If a kid is quiet and not demanding attention, then the easy course is not expend attention on them. After all, there’s enough other stuff clamouring at them already.


Specific needs and vulnerabilities of internalised PDA


We internalisers, by nature, tend not to self-advocate or ask for help. We shrink from having our differences observed. This means we hide each and every difficulty we have.


Roller-coaster emotions and alexithymia

Our PDA guarantees super-high anxiety and other strong emotions surging on privately in our heads and bodies, but, as we’ve seen, internalising PDAers want to hide it.

Many of us have “alexithymia” AKA emotion blindness.

As PDA anxiety is nonstop from birth, it’s hardly surprising that we are commonly blind to our anxiety. It’s our normal.

All the fun and fireworks of PDA, and any other invisible difficulties, are still there, but we instinctively don’t want you to know about them.

Not wanting obvious accommodations

We may not want accommodations that’d mark us as different – e.g., being permitted to leave a classroom if we’re stressed.

We don’t want to stand out as different, and we don’t want anyone to spot our vulnerabilities.

We are distressed if we’re treated as needy.

Internalising PDAers need sensitive, respectful support which doesn’t spotlight us.


Not asking for help

Help can feel demandy to all PDAers because it entails giving up that personal control we so badly need. But we internalisers also have the issue of not wanting to be seen as vulnerable.

Aged about ten, I fell off a high wall. My whole drive was to get back into our house and sneak upstairs without my parents noticing I was vulnerable!

At this same time, I fantasised about a knight in shining armour charging into my life to rescue me from all the stuff I couldn’t cope with.

My daughter, in school, doesn’t ask for help when she’s stuck in assigned work. It took her until year six to first let her teacher know she needed a toilet break. After a few years of accidents, she developed an iron-strong bladder!

We internalising PDAers are the kind of people who – young or old – will harm ourselves by not asking for our needs to be met.


Surface level success

We may get along very well academically. Great! But our hidden, underlying anxiety can escalate to horrendous heights.

These kids, who appear to be model pupils, implode so they can no longer access school. Or even leaving their rooms.


Quietly avoiding school, doctors, etc

We may pit our wits to avoid school sneakily. E.g., by feigning illness and playing truant.

We may put ourselves in danger.

I was chased for miles by a strange man when I was playing truant aged about ten.

Internalising PDAers can, and do, avoid necessary medical support.

Tragically, a dear friend, I met through an online adult PDA support group, died from pneumonia that had escalated because she kept avoiding GP and hospital appointments.


Social vulnerability


A trait of PDA is social focus: being interested in people.

We may be very naive and be led by people who don’t care for our welfare.

As a young adult, I was desperate to connect with others, but paralysed by social anxiety. I self-medicated by taking a dangerous quantity of party drugs and alcohol. I didn’t care about the danger. I was, in fact, impressed by my body’s ability to keep going! My priority was to quash the anxiety that crippled me unless I knocked it out of my brain via drink and/or drugs.

I wanted to be relaxed and able to talk to others. But I couldn’t unless I was high. I noticed that I couldn’t speak to the friends I’d made whilst high when I was sober.

I repeatedly made brave efforts to forge friendships when I wasn’t high, but I always failed.
That horrible wall of anxiety wouldn’t go away, no matter how much I’d willed it to. The only thing that made it disappear was drink, drugs, or being with the rare few people I felt OK with sober (these were out of my control to choose and totalled between zero people and three).


Obsessions about people

PDA social focus can become obsessive.

People obsessions made my life hell. When my PDA brain fixated on someone, or a group of people (normally it’d be a man I fancied) it drove out all other thoughts and puppeted me to blindly, and obsessively, throw myself at them… whilst too scared to be able to chill out and connect with them in a fruitful way. This tended to make me very depressed, and even suicidal.



Tell tale signs to look out for

How can people spot the needs of people, including children, who are driven to evade having their needs detected?

Think of an overworked teacher in a classroom full of lively, demanding children...and of an internalising PDA kid muddled in with them who’s critically stressed, but hiding it.


Hard to connect with

This is the child who likely evades eye contact and is, maybe, a bit rigid. They might be hard to warm to because of this, and because they don’t reach out emotionally. Also, they might behave weirdly. Or come across as sullen. Or as a daydreamer.


School absences

School refusal is very common for all PDA kids, but internalising PDA kids are likely to evade school more subtly than externalising ones.

Whilst externalising PDA children may simply try to run away from the school building, or yell at teachers that they don’t want to be there.

Internalising PDA children – as I was – maybe more likely to feign illness and use their wits to get away with playing truant.


Playing the clown

They may also play the clown in class. I did this as a child.

“Funster” is coming to be recognised as an adrenaline response (like Fight, Flight and Freeze) that’s socially oriented. There’s high anxiety going on behind the loud, clowning facade.


Diligent compliance

Other internalising PDA kids, my daughter included, comply in school. They bend their entire beings into being model pupils who mix, as perfectly as they’re able to, with their peers, and with school expectations

If parents say their children are loud and demanding at home, teachers can assume this is due to poor parenting because they’re perfectly well-behaved in school.

What’s actually going on is high anxiety triggering the adrenaline responses of fawning and social freezing (tonic immobility).


Situational mutism

Situational mutism is, I believe, tonic immobility.

My daughter was, as I was, situationally mute in school.

“Situationally mute” is preferred to “selectively mute” because terming our silence isn’t a choice.

It feels like being trapped behind a solid, icy cold wall of fear that I can’t penetrate
A signifier is having a rigid facial expression. This was blindingly obvious to me in every, single photo taken of my daughter in school, but no one else seemed to notice.


Spare play

A good pointer is “spare play” – a term coined by a young client of speech and language therapist, Libby Hill. It means actively moving around & making gestures so it looks like a child is actively playing with their peers. Close observance reveals that the child is actually playing entirely alone.

I engaged in it because no one wanted to play with me.

My daughter seems to have spare played because she preferred to play alone.



Being stressy

Our internalised style of avoidance is less-confrontational, but can still feely “stressy” to others. Instead of having no-holds-barred meltdowns, we pull our anger and stress in, but it’s still there and will come out as being irrationally argumentative or even verbally cruel. It may also divert into self-harm.

 

Arguing like a lawyer

It’s common for PDA kids to argue like little lawyers. Anxiety, I think, can up the tempo of this.

When our daughter does this, it feels like there’s ill-ease and panic underlying her lawyer-style dissection of everything we say.

PDA type demand avoidance may be a driver too, because accepting what we say is always going to be a demand (that’s the nature of PDA type avoidance) and when she’s overloaded she has no resilience spare to handle it.


What are the main differences, and similarities, between internalising and externalising PDAers?


We’re all different. Even within PDA, one size doesn’t fit all.


Similarities

~ deep-level irrational avoidance of anything and everything

~ massive need for personal control

~ ultra high anxiety (if we’re conscious of it or not)

~ likely comfortable in role-play or quiet fantasy


Differences

Externalising PDAers express their PDA traits in external, easy to spot ways (e.g., via the Fight adrenaline response)

Internalisers express their PDA in harder to spot ways:

~ Freeze
~ Fawn (become people-pleasers)
~ Flee
~ Funster, even


How to support internalising PDA children and adults

Supporting internalising PDAers can be challenging because we don’t want anyone to know we need support!


Accepting us as we are

The best way to support internalising PDAers, in my opinion, is to accept:

~ we have massive anxiety going on inside
~ we don’t want it spotted
~ we have irrational PDA-style demand avoidance in operation
~ our ultra-high need for personal control


Don’t try to fix us

I think it’s important to accept PDA traits as hard-wired, rather than trying to cure them.

I’ve had therapists assuming I need to overcome being anxious. But my path to happiness took me through accepting my anxiety (and other quirks) and living with them.


Give kids time

Trying to rush internalising PDA kids into behaving like other children won’t work.

We advised our daughter’s teachers against trying to force her to speak more. She’ll do it her own time.

We sensed her unspoken terror of lying alone in the dark. She co-slept with us until a month or two ago, despite  conventional “wisdom” that 11 year olds should have been sleeping alone for many years – some would say since birth.


Non-judging environment

I think we need to feel safe from being negatively judged, and that it’s important to avoid panic-prompts (triggering the child to panic more).

We don’t make a big deal of it when our daughter gets into an irrational mood or suddenly wants to avoid something she’d just asked for.

Light humour and distraction can be effective.

We might feel frustrated to our cores when this happens, but we don’t blame her.

We keep calm and carry on (though I actually hate that phrase because it has a demand in it!)


Be open about our own stress

We’re only human. Our daughter can and does overload us.

I’m PDA too so very prone to overloading, especially because we both have an innate need for personal control.

If I snap at her, I apologise later and explain that I’d found it too much and I still love her and I’ll do my best not to snap at her again.

My own mum used to deny ever having been stressed and this confused me massively because I clearly sensed her stress.



Picking battles

Health and safety are priorities for us. We explain concerns factually so our daughter can understand why we think certain things are important.

We give her space to disagree too (she has a natural inclination to argue like a natural born lawyer!)
 
She tends to come to accept our reasoning.


Summary of strategies

~ be accepting
~ maintain a calm attitude
~ be flexible
~ use gentle reasoning
~ be honest if you’re stressed
~ pick battles
~ give space for disagreement

Saturday, April 16, 2022

Internalised PDA - the quieter, but equally impactful presentation of PDA that's hard for people to spot

This blog article is also available as an animated video: click here to view it

PDA research & writing has focused on externalised, freely-expressed presentations of PDA.
 
However, internalised PDA is often completely missed because our meltdowns are concealed and demands tend to be avoided subtly, and we slip below the radar.

We internalisers though are not "less" PDA. Just like an iceberg isn’t smaller than a same-sized lump of ice on dry land: the iceberg merely looks smaller because the majority of its body is hidden from view under the water.


Internalising PDAers’ driving forces are just as strong as those that drive externalising PDAers, and can lead to self-harm, dropping out of school & employment, and even suicidal ideation.

I believe that internalised PDA needs to be brought into the radar.

As we’re so good at concealing our traits, it takes internalisers like me to signpost people to our quieter, less accessible half of the little-explored PDA continent.

The only PDA maps easily available were drawn by non-PDAers and have sketchy details and guessed content saying things like “here be dragons”. But, as an inhabitant of the PDA continent whose been doing a lot of exploring and getting to know my neighbours, I’ve been putting together a much more detailed and accurate map, which I’m happy to share with you during today’s tour.


 
So please step this way for your guided tour of our PDA continent, in which we’ll spend most of our time in the part we internalisers inhabit. Your tour will include:

  • What PDA actually is
  • Internalised meltdowns
  • Forms of masking
  • Situational (aka "selective") mutism
  • 'Spare play’ (children feigning playground sociability)
  • Fight versus Fawn, and other adrenaline responses
  • How to support internalising PDAers


What PDA actually is

We’ll start our tour by looking at what PDA actually is. As we’ve seen, outside appearance is just the tip of the iceberg for PDA.

Understanding of PDA is still very much in its infancy. There is no definite knowledge about it.

But there are a few core traits that most people, including actual PDAers, agree with.

To understand what these core traits are, it might be helpful to have a fly over of the PDA continent. Here you can see it from space. As you can see, much of the PDA continent is deeply forested. We can’t easily see what lies beneath the forest, but there are clear areas that are easier to make sense of. Let’s have a look:

  • The Great Quicksand of Demand Avoidance covers quite a huge area. This sand is extremely sticky. If caught in it, it holds you fast so you’re trapped, and it’s very, very hard to move at all.
  • The Icy Cliffs of Anxiety form a fearsome obstacle. To get past them, people must follow a path along a narrow, slippery ledge at the top of a precipice with a drop of a thousand meters onto jagged ice splinters. Howling winds make it even harder to stay balanced. People have been known to totally freeze here, unable to move at all.
  • The Precarious Boulders of Control-Need are an unusual geographical feature. The boulders are balanced very precariously on the pillars of rock that support them. It won’t take much at all for them to become dislodged so they crash down onto the ground.
  • the Volcanic Ridge of Fiery Emotions are an extremely volatile place! Great big bursts of strong emotion can erupt at any moment without warning. 
  • The Misty Margins of Fantasy and Role-Play are shrouded in mist, so it’s hard to make anything out clearly. People here might be one thing, or they might be another. They can switch who they are as if by magic.
  • The Village of Social-Focus has lots of residents, but there are high walls separating residencies. Even though PDAers are interested in other people, we still have a high need for privacy and personal space
  • The Temple of People Obsession isn't visited by all PDAers (we don’t all develop obsessions about people) but many do. These obsessions can be all-consuming and really hard to break out of.

So now we’ve toured the easy-to-spot features of the PDA continent, but we have not yet seen what’s hidden within the deep jungle. Flying overhead won’t give us any clues. We need to get down to the ground level if we want to find out what’s hidden here. This is the realm of internalised PDA.

So, I’m inviting you now to come with me into the dark, uncharted forest. Are you ready?

Welcome to the little-known realm of internalised PDA. Very few outsiders have ever been here. But fear not, I’ll guide you, even though the geography is very hidden.


Masking 

When PDAers who generally externalise mask, they are internalising, because masking is totally about concealing our inner emotions and thoughts.

Many people think of masking as an unhealthy thing which autistic people are forced to do by neurotypicals (people with "normal" brains). While this, sadly, does happen, not all masking is like this.

Some masking is actually instinctive. It’s well-known to science that rabbits and other prey animals mask illness and vulnerability so they don’t look like easy targets to predators.


Masking can also be used to help us communicate successfully. If, for example, we’re in a party or maybe a job interview, it’s quite normal to adopt a mask of expressions and mannerisms that we know from experience are likely to go down well. This is not because anyone’s forced us to suppress our natural selves, but because we’re not sure of the “language” the person we’re talking to uses.

Many PDAers identify both with instinctive masking and using masking as a communication tool. We feel confused when autistic people talk about “dropping their masks” because doing that feels neither possible nor desirable.

It’s a confusing area, but I can tell you right now that the masking I carry out nearly always feels jumped on me, and very rarely like something I’ve thought about doing, or had a choice with. It feels natural and automatic.


Internalised meltdowns 

Our internalised meltdowns can totally confuse people because they don’t look anything like what people think meltdowns are.


Most people think of meltdowns as very, very obvious things that can’t be missed because meltdowning people are out of control, loud and probably violent.

But meltdowns can be pulled inside – internalised – so they’re not obvious to observers.

Internalised meltdowns are, I think, the defining, key feature of internalised PDA.

So what do they look like from the outside? Well… nowhere near as flashy or as explosive as externalised ones which have no holds barred. Internalised meltdowns have the same amount of discharging, aggressive energy, but it’s choked inside (like a swallowed firework) and can express itself as a barrage of awkward, mean accusations. Or as an irrational, difficult mood where everything’s argued with. We might start punching our own head. Or, even, quietly cut ourself with a knife, or pull our hair out in clumps when no one’s watching.

So, and here’s a big point, while internalised meltdowns might not trouble observers, they do cause huge trouble and pain for the people who experience them. They can cause us to alienate the people closest to us, because we’ve gone into “bitch mode” and said horrible, nasty things for no apparent reason. And they can cause us to subject our own bodies to physical harm.

When I go into meltdown it’s truly horrible. I absolutely hate it. Every second. It’s like a demon has possessed me. I’m completely out of control. I witness myself with shocked horror as I fire a barrage of cold, heartless, mean words at someone I love. I hate myself for saying all these words that I know will hurt them. I cringe inside. But I can’t shut up. I can’t stop myself from saying all these nasty, nasty words that I’ve dredged up to inflict maximum emotional damage. It honestly feels like I’ve been possessed by a devil whose gained access to all my memories and every dirty piece of knowledge that could hurt the person it’s chosen to attack: the beloved person my mouth is spewing spite at. I blame myself for every cruel slur I fire at them. My ego deflates with my shame. How can I be so horrible? What’s wrong with me?

 

This question, “What’s wrong with me?” plagued my life until I discovered my neurodivergence after decades of trying to figure out why I couldn’t just get along in the world or with other people, even though I’d tried. Not knowing what was “wrong with me” caused constant, major depression, substance abuse and zero self-esteem.

Why did workplaces trigger me to flee within minutes so I couldn’t earn an income to live on? Why couldn’t I will myself to keep my home clean? Why did I avoid all aspects of personal hygiene (for example, every damned stroke of my hair brush) even though I wanted to be well-groomed and clean? Why did I keep getting overwhelming crushes on men so I couldn’t stop thinking about them and drove myself crazy, but when decent people came into my life, I tended to panic and flee as fast from them as I did from jobs. What was wrong with me? Why was I incapable of enjoying the company of anyone, bar a very, very small number of people, and why couldn’t I make new friendships as easily as everyone else seemed to?

I recently watched a TV program where a doctor said that loneliness is as bad for health as smoking fifteen cigarettes a day. 



Considerably more than fifteen a day, I thought, if loneliness compels you to chain smoke!

“Don’t be proud,” he said, “just go out there and find companionship.” Umm, well, if it was that easy, I’d not have spent so much of my life depressed and desperately lonely! I can’t just make friends. It’s like I’ve got a force-field of fear and self-doubt preventing me from relaxing with people that I don’t know well.

On top of this, I’ve spent my life saying things and behaving in ways that turned out to have insulted people and/or weirded them out. My sense of humour – which can be very dark – confused them or made them uncomfortable.

I failed to read social signals of “welcome" or “go away”.

Compounding matters even more, I have something called “rejection sensitive dysphoria” (let’s call it RSD) that makes me hyper, hyper sensitive to any imagined rejection, so it feels that every, single person in the world hates me, and this feels awful beyond words.

Now add to this my over-sharing naiveness, and I was an easy target for bullies at school. I was like a fish out of water. And miserable. School was total hell. The other children shunned me and I didn’t know why. But it hurt. Deeply.

As you’ve maybe picked up, there are some pretty dark corners in the internalised realms of the PDA continent! 



Spare Play

‘Spare games’ was a term coined by a nine-year-old girl who speech and language therapist Libby Hill once had as a client.

It means skipping about in the school playground so it looks like you’re playing with the other kids. But you’re not really interacting with them at all.

Libby says she’s since met many other PDA and general autistic children who do this.

Our daughter’s SENco witnessed her spare gaming aged 5, and then still doing it last year (she may well still be doing it now)

I spare gamed too. I had energy to play, but no one to play with because I couldn’t connect with my peers. I’d switch into my latest immersive daydream scenario – one involved me living in a wooden hut in a forest with tame fawns – and skip around acting it out.

From things my daughter told me after school, coupled with what the SENco told us, it seems she’d been acting out her own daydream of getting up to outrageous mischief with her classmates. The reality has been that she’s been mute in school and scarce interacted with her classmates at all.

Her teachers and SENco have been supportive and encouraged other kids to invite her to play, but she told us they annoy her and she prefers to be alone.

Libby Hill told me that some of her young, spare gaming clients have said they’ve preferred to play solo, but others had wished they actually could play with their classmates. This was the case for me. I just lacked the ability to bond with them. I hated feeling like a social failing misfit. It was depressing and my self-esteem plummeted.

Now, the important thing I think people need to know about spare play is that many teachers, SENcos and visiting assessors don’t know to look out for it. They see the child in the question appearing to be playing actively with their peers and assume they’re getting along just fine and have no social issues.

The trick is to keep on watching the child. If they’re spare playing, it soon becomes clear that they’re not interacting with their peers at all.


Selective mutism

Let’s now take a peek at situational (aka "selective") mutism.


Selective mutism (which some neurodivergent people prefer to be termed "situational mutism") means being very quiet in some situations, e.g., in school, but not in others. We’ve already seen that my daughter, Millie, is like this. While she has scarce ever spoken in school, she’s loud, lively and talkative at home with us.

I relate to how she feels because selective mutism has majorly impacted me too. I didn’t know it had a technical name until I watched a PDA Summit webinar by Libby Hill a couple of years ago and I realised what I’d thought of as ‘my fear wall’ is selective mutism. It’s so great when I can connect my lived experience to known theories (the wiring of my brain has been an ongoing tangle to unravel!)

Google tells me selective mutism is caused by extreme anxiety, and I can totally attest to this from my personal experience. It’s horrendous! It feels like an impenetrable column of ice has engulfed me so I can’t speak to people even though I want to. No matter how much I’ve wished to speak freely and connect with others, this ‘fear wall’ has been unbreakable. I never chose to have it, and didn’t know how to make it go away.

As an adult, often lonely, I sometimes decided to take positive action and just go out and connect with people. I’d choose people I thought I’d likely be able to relax with, and sit down with them, making all the right moves, but that dratted wall of icy anxiety would spring up to paralyse me. It was a curse!

So, we’ve seen what selective mutism feels like, but what does it look like to observers?

The NHS’s webpage on selective mutism says:

Selective mutism usually starts in early childhood, between age 2 and 4. It's often first noticed when the child starts to interact with people outside their family, such as when they begin nursery or school.
The main warning sign is the marked contrast in the child's ability to engage with different people, characterised by a sudden stillness and frozen facial expression when they're expected to talk to someone who's outside their comfort zone.


This totally fits how it went for Millie. When I started taking her to playgroup when she was a year old, she ignored the other toddlers. She reached past them for toys as if they were invisible. I remember the playgroup organisers filling an inflatable paddling pool up one afternoon and encouraging us parents to strip our little ones down to their nappies and sit them in it. Millie sat there rigidly showing no awareness of the three other toddlers crammed in around her. Her expression and posture was rigid, almost like she was made of stone.

I’d come to suspect my own autism just after Millie’s 2nd birthday when I came across a female autism traits list on Facebook. The trait that most grabbed my attention was masking & social mimicry (we’ll come back to this). I sought and gained my autism diagnosis a bit later that year, and then began to notice signs of autism in Millie. The playgroup organisers hadn’t heard of female pattern or masked autism, and told me that Millie was just shy. She was fine, they said.

But I didn’t think she was “just fine”. She clearly wasn’t happy at all. I could sense her anxiety like a silent car alarm blasting in my brain. She started nursery and was rigidly silent there too. Both the nursery manager and a senior health visitor dismissed my belief that Millie was autistic. The senior health visitor said she knew all about autism and Millie’s notes showed no sign of it at all.

And she’s had this exact same rigid expression in every photo snapped of her in school. From foundation, right up to year 5, her teachers have produced learning journal books and display boards showing Millie and other children going about their activities. The wooden rigidity of Millie’s expression has patently been obvious in in every photo.

Thankfully my GP and the local autism assessment centre had seen the merit of my concerns and Millie gained her own autism diagnosis just after her 4th birthday. This has meant that her school SENcos and teachers have better listened to my concerns about Millie’s veiled anxiety. They have supported her as best they can (as we’ve seen, she’s resisted playing with her classmates even when supported to do so). She’s starting secondary school in September. I really hope she’ll be OK there.



Masking revisited

Something I think it’s worth bearing in mind is that situational/selective mutism creates a type of ‘masking’ because it paralyses us so we can’t freely express ourselves. We can’t smile or swing our arms around to show enthusiasm. We can’t communicate unhappiness either. Or fear. Or anger. Or anything at all. Everything we feel is masked by the ice that’s engulfed us.

Millie has told me that she doesn’t want to stand out as in anyway different from her classmates. She doesn’t want special treatment. She even gets anxious if she scores well in a test. It upsets her. She wants to get average scores.

So we’ve seen two or three types of masking which we PDAers may experience: 

  1. Rabbit-style hiding of vulnerability; which may be the same as... 
  2. Situational/selective mutism (which freezes us so we can’t express any feelings at all) 
  3. Masking that enables us to communicate when we couldn’t have done so otherwise.


Neither of these masking-types are what autistic people are referring to when they talk about "dropping their masks".

I think this really important for people to realise (hence my revisiting the topic).


Internalised PDA: what we’ve seen so far


So what we’ve so far seen in this tour of the internalised part of the PDA continent is:

  • Masking
  • Internalised meltdowns
  • Spare play
  • Selective mutism


I should clarify that not all internalising PDAers do all four things. Some might be selectively mute, but have externalised meltdowns. Others might internalise their meltdowns, but talk freely in school and play with their peers. However, every one of these traits causes our feelings, thoughts and desires to be hidden from view. In other words, internalised.


Adrenaline responses    

We’ll now have a look at adrenaline responses. Most people are, I think, familiar with the ‘fight/flight/freeze’ trio of adrenaline responses, but there are a few lesser-known ones we’ll be taking a peek at too.

We’ve seen that externalising PDAers don’t filter their meltdowns so they burst out as obvious explosions of stressed emotion. And also we’ve seen that we internalisers swallow meltdowns inside, maybe kind of like throwing a heavy blanket over a grenade to contain its explosion.

The same difference between externalising and internalising holds true for people’s adrenaline responses. 

 


Animals developed adrenaline responses right back in the dawn of time to protect themselves from threats, and we humans inherited these hard-wired protection responses. 

PDAers have naturally high anxiety which makes us super-prone to our adrenaline responses being triggered. But the way adrenaline causes us to automatically react may seem peculiar, especially if:

  1. What we perceive as a threat isn’t obvious to observers (for example, feeling trapped by a demand)
  2. Our adrenaline reaction is internalised so it comes out, perhaps, as fainting, being eager to please, telling blatant lies or even clowning around.


As I said, most people have heard of the ‘fight/flight/freeze’ trio.

Fight and flight are what’s known as primary defence mechanisms for dealing with threats. Maybe think of a momma bear fighting to protect her cubs, and a deer fleeing from a wolf: natural instinctive reactions to deal with threats.

Freeze is fight or flight put on hold. Think of a rabbit caught in headlights.

A fourth adrenaline response is flop. Flop is a secondary defence mechanism where an animal, or human, becomes immobile, or even faints, after the predator catches them. Although flop can look like freeze, it only happens after the animal’s been cornered so fight and flight are no longer options.

When an animal (or person) freezes like this after being trapped, it’s termed ‘tonic immobility’. If they faint, or play dead like a possum, it’s termed ‘collapsed immobility’.

This could maybe account for selective mutism: we go rigid because we can’t fight or flee.

The flop response is known to be common for people who’ve been sexually abused so they were trapped and couldn’t fight or flee.

A fifth adrenaline response is fawn. When animals do this, it’s termed “submissive behaviour”. Think maybe of a dog bending down submissively so a bigger dog doesn’t attack it. When people fawn, they try to please others at the expense of their own self-care.

The final two adrenaline responses I’m going to talk about are unusual because they’re not known in the animal kingdom. They seem to have developed out of the complexity of pressure and opportunity human society has created. Their ‘F’ names are fib and funster. 


OK, so now we come to funster.

The funster adrenaline response isn’t very well-documented, but I think many people listening here today will identify with PDA children flipping into a manic, hysterical clown-mode when they’re with people they don’t feel relaxed with.

When we went out for meals with people Millie didn’t know well, she used to crawl under the table, giggling, and undo their shoelaces. She’d not, though, be able to look them in the eye or sit relaxed where they could see her.

This was her funster mode. I relate to having gone into funster too. It’s a panicked clown state I’ve flipped into when I’ve felt trapped in social interaction situations where I’ve felt major panic about what I’m supposed to say and do. How I am supposed to behave? I think there’s a demand avoidance issue going on too: the demand to behave *correctly* has often tipped me into behaving incorrectly, and my giggling, silly funster response has been a way of dealing with the pressure.

OK, so here we are now at the final adrenaline response with is fib.


An article on an online ADHD website called ADDitude Magazine explains

"With complex and advanced language (not available to our primitive ancestors), we have the ability to verbalize both factual and/or fictitious reasoning instantaneously at point of performance, most notably in times of stress and threat.”


I used to fib like crazy as a child when cornered. My driving emotion was total panic. I’ve witnessed Millie going into fib-mode too and intuitively understood it was anxiety-rooted. I knew she felt cornered. Telling her off for fibbing would have just made her panic more.

So, just like flop, fib is maybe a secondary defence mechanism that people go into if caught and trapped.

PDA Society once told me that many of their enquiry line calls are from parents seeking to understand why their PDA kids lie so much.

My very strong hunch is that it’s because of triggered adrenaline, and, as we’ve seen, we PDAers are especially prone to our adrenaline being triggered.