Saturday, April 16, 2022

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

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.






Saturday, January 1, 2022

Experiences of PDA's presence at birth... and before

PDA, which stands for "pathological demand avoidance" is a neurotype (life-long neurological difference) which matches criteria for autism spectrum diagnosis because it entails rigid thinking (our demand avoidance) and social communication & interaction issues.

Empirical evidence for PDA is lacking, and there's an army of critics saying PDA doesn't qualify as a distinct neurotype. Some argue that PDA is a trauma response that any autistic person can experience. These arguments fail to acknowledge that PDA, as a neurotype, is more than its trait of "pathological" (AKA inborn and involuntary) demand avoidance. "PDA" refers to both our demand avoidance trait and our entire neurotype, which has the additional traits of people-focus; high anxiety; personal control-need; and propensity for fantasy & role-play.

People who directly experience PDA, either because they're PDA themselves (like me), or because they have a family member  who's PDA (like me also) don't need empirical proof our condition's existence: it's blatantly obvious. However,, much, much more empirical evidence is needed to silence the objections of sceptics, who have no direct experience of the neurotype.

This blogpost is an assembly of first-hand parental experiences of the presence of PDA from birth, and even pre-birth. Whilst this isn't empirical evidence, it does provide a catalogue of lived experiences from a wide range of individuals. These quotes are from a blogpost originally posted by Free PDA in December 2021, and were provided by members of the Free PDA Facebook group.


Pre-birth PDA

Sharron Maddison: My son stretched out a lot in the womb, it was extremely painful. He broke his waters at 32 weeks and the doctors joked that he was a stroppy little monkey. He went into distress during the birth at 36 weeks, things were taking a turn for the worst. As soon as he was born he was absolutely fine. The doctor commented about his impatience and said you're going to know you've got that one! Never a truer word spoken

Christine: Well ... He wouldn't come out for a start. After that he was the most placid baby I've ever met. Hit milestones, though we always wondered should he cry more?! I think I counted 12 weeks with no crying. He was like an angel! This was all during first yr I'm talking about

Louise: My waters broke a few weeks early, (probably due to loose connective tissues), and I went into hospital for observations to ensure there were no infections, and every time a monitor was placed on my baby in my womb the nurse would say click this button every time he moves. Me : click, click, click, click, click (in rapid succession), nurse: no, only when he moves, me: he's kickboxing the monitor every time you place it on him! He is not happy at all!

After 2 days I was finally induced, and after 4.5 hours he was placed on my chest where he was lovely and snug and happy. Until his Dad decided he wanted a hold of him! He screamed and screamed, threw his head up with his neck was stiff and straight as it could be (with no support), and he gripped his fathers finger til it went red! As soon as he was handed back to me though, he calmed down again!

And this set the pattern of him being a really passive baby as long as he was with me all the time. However, things soon got difficult when I went back to work and other carers were involved

Louise Perry: My daughter was 13 days overdue, positioned sideways & wouldn’t budge. She needed a hell of a lot of persuasion to come out! She was the happiest baby, always smiling and taking everything in. Rarely cried. I lost count of how many people would say ‘she’s so chilled out’. I now look back and see that she fits the ‘passive early history’ description. She slept a solid 12hrs through the night from 8 weeks old. Napped twice a day. But, she would never sleep in the car seat, sling or buggy. And would be extremely unhappy if she missed her nap. So we had to follow her (very strict!) routine & be at home for her naps. It made it tricky to leave the house for long. Age 6 she still hates leaving the house!

Neonatal PDA

Pat Kind: My boy was very attentive and alert from the beginning, straining to watch the tiny tv in the maternity ward and focusing on people's faces. He could interact taking turns to make noises and facial expressions, which everyone remarked upon, a sign that he was developing the ability to communicate very early. He begun using words, from 8 months and by 18 months was using sentences of up to 5 words. He was quite an easy baby who slept well at night and only really cried when being undressed. From around eight months he begun having huge difficulties falling asleep and waking up which affected his mood at those times. He would be very loud and angry before and after sleep. 23 years later he still does not follow a 24 hr sleep pattern. (My son was diagnosed with ADHD aged 10 back in 2007. Camhs rejected my suggestion that he was autistic because he didn't fit the typical profile of language delay and communication difficulties. He didn't not make it through the education system, leaving school at 14. As soon as I heard about PDA it all made sense. I actually work with children with PDA now so I am confident that he has this though not medically diagnosed)

Adira Restless: My PDA son was different from the start. Everything had to be on his terms from day one. He forced himself upright in the hospital and shocked the nurses because they thought that was impossible. He hated being cuddled and wrapped. Always seemed to want to be free.  Then from about one he'd drive us mad screaming for things and then not wanting them the moment he got them. He would refuse them completely (things he really wanted) and we couldn't figure out why.

Louise: Adira, the nurses at the hospital were shocked over the same thing with my baby! It’s that unbelievable strength they have!

Adira Restless: Louise, it's amazing. My daughter was the same. I've got photos of her at 7 weeks after she'd forced herself into a standing position pushing against my husband's leg.

Sally Cat: My baby looked completely furious after being pulled out of my womb via c-section!

Anonymous: My first baby was highly alert from the moment he was born. His first day he held an intense gaze with me and his dad. From the start he was straining to hold his head up and look around. Health visitors commented on how strong he was and how intent he was on interacting with people. By 3 months he'd learnt how to make a joke (turning away and then looking back suddenly). Feeding with anyone around was hard as he would be straining to watch everyone and couldn't concentrate on the feed. He didn't like being put down, so spent most of the time being carried so he could see what was going on. He would grab our faces and turn them to him if we were talking to anyone else. Sleep was hard for him, as it is to this day. He needed close physical contact or to be in motion.

Kathryn: My DD1 was born at dinner time, and we both slept soundly in a noisy ward soon after. Then it started - every time she was laid down so my blood pressure could be checked she screamed the place down. My BP was suddenly high so they kept checking it and trying to get a blood sample. When I was holding her I quickly realised she was happiest up on my shoulder looking around, so there she stayed (neck supported of course). That night she started bringing meconium back so it was an utter nightmare. The next day the midwives realised that if they took my BP when I was holding her it was a lot better, and the blood test didn't show any danger signs, so I took her home. She'd already communicated two things very plainly to me - don't put me down, and let me look around. Over the coming months she continued to control her environment with crying (only one cry, the "mummy save me" one), early smiling and pointing. She detested baths, she made incredibly strong eye contact, she hated to be out of arms (anyone would do until 13 months) and she never laid on the floor until she could sit. She failed to put more than 2oz a week on in spite of feeding lots, and the paediatrician, seeing her at 2 months babbling, fixing him with her gaze and waving her arms about, declared she was using all the calories she consumed for learning about her world rather than creating fat cells. Now I understand so much of her baby behaviour was seeking autonomy, and as an extension of her body I was part of that control. She was always determinedly non-routine. I myself am a naturally routine person, but she fed different times every day, napped different times, filled her nappies different times. She did wake and sleep within a 1 hour window though, albeit a late one (11ish to 9ish) with her longest night feed around 4ish until 15 months.

Kellee: My daughter was the perfect baby, however I worried she was sleeping too much as she never woke for feeds during the night. She was my first child and I took everything the HV said quite literally, so I was worried she wasn't having enough milk as she didn't feed during the night - I took her to the docs when she was 12 days old, the doctor laughed at me and told me to enjoy my sleep!!
She was a fussy eater when it came to weaning (very much still is!) everything plain/beige food. When she began to crawl she was very over cautious, even at soft play areas! Fussy with clothing, wouldn't wear jeans.
Very sensitive to noises - hoover, hair dryer, hand dryers, motorbikes!

Passive babies

Anonymous: To me she was just a normal baby, nothing really concerned me, very happy and didn't fuss a lot. She has symptoms of PDA now though, hates routine, interrupts us asking questions as demands, manipulative (we feel like we aren't allowed to do what we want to do without consequences), Jekyll and Hyde meltdowns, needs a constant supply of made up stories and role playing to help get stuff done, very creative.

Riko Ryuki: Nope, I didn’t notice any signs of PDA in my babies, not even slightly.
I've two PDA kids. I didn't learn about PDA until they were 9 and 2, but even if I had known I wouldn't have twigged because they didn't show any signs until age 2 (with middle child) and 5 (eldest). They were generally calm babies, quick to smile and play and reached all their milestones okay. My eldest was mostly fine, only the occasional outburst or refusal, until he started school, that's when things just got harder and harder. It was so obvious that he was masking outside the house, you could see the change as soon as we got outside the door, like a light switch had been flipped. Inside the house it was like all hell had broken loose, it was meltdown after meltdown, not helped by my lack of knowledge of PDA and so using the wrong strategies. With my middle child, he was stubborn and 'set in his ways' from a young age, around 2. Everything had to be a set way and if you didn't comply then he'd scream. I thought he was just stubborn for ages, but by the time he was 3 it was obvious that there was more to it than that, especially once his nursery pointed out things that just screamed PDA. From 3 onwards he was classic PDA.

Jazz Spree: My daughter was a happy baby, met her expected development milestones, slept and ate well. The only thing I can perhaps identify, with the benefit of hindsight, is that sometimes she would cry for no apparent reason, appear to be really cross or frustrated by our attempts to placate her (after checking the roll call of usual triggers, obviously). She would eventually wear herself out and sleep. She seemed to sleep for ages (relatively, compared to my friends' babies) but in reality she was happy in her own company playing with her feet!

Liz: I had no clue, but reading these comments is enlightening. My eldest PDAer was a very smiley baby, interested and engaged, very easy until it came to sleep. She was not up for sleeping alone, or for more than 2 hours at a time. Napping in the day didn't happen unless in a sling. But she would smile at strangers and watch intensely.My youngest, who is 5, is probably also a PDAer, but very different to her sister. She was very determined from the moment of her birth, you could almost feel her powerful personality. She rolled over at 3 months, crawled at 4 and walked at 8 months. She was utterly joyous as a baby, busy, determined, happy, giggling from 4 months. She breastfed constantly and wouldn't sleep unless I was holding her.

Philippa: By a couple of months old, our son was sleeping 7pm-10am and napping 12pm-2pm. It felt like I hardly saw him awake. He was difficult to wake up. When he was awake he was the most chilled baby. Hit all his milestones early. He didn’t seem to need anything until he started nursery at 18 months old. Then he changed overnight.

Maggie: My daughter was incredibly placid.... it was a shock to my system to be honest after having two very "high-needs" babies who must be stuck to you at ALL times. If I tried to interact with her when she wasn't interested, it was made very clear by turning her head away and refusing to engage at all, balling fists up, wriggling, fussing, until I laid her down and backed off a little, when she'd quickly appear much more content. On her terms, she was just as snuggly and loving as my other 2, and she did frequently seek out that closeness and affection, but ONLY on her terms. She was easily overstimulated as a baby, but very fascinated in just casually observing what was going on around her.
She slept well, I had to nurse her with as little physical contact as possible or she would be too grumpy to maintain her latch. She was colicky + was put on medication for silent reflux quite young (about 4mo I think). She reached her milestones well, but again - fiercely independent and wanted NO help that was offered to her, only when she made it known that your assistance was required.
She got upset if we celebrated her doing something cool - unsure whether it just overwhelmed her, no matter how quiet or calm the acknowledgement was. We say she came flying out of the womb incredibly headstrong, and that is a personality trait that has continued to blossom as she's grown too.
As she started to move about a bit, she often worked quietly "under the radar" while her more boisterous siblings would be taking centre-stage, and would saunter off herself to explore whatever caught her eye. From being newborn she was definitely very passive and preferring to observe rather than to be in the heart of whatever was going on. This continued as she reached toddler stages, and she never seemed to click that I was already wise to it, and so while I'd be engaged in conversation with her siblings I'd always have one eye on her too. She was always really shocked to find that I knew what she was upto, and still is now. Clearly thinks she's invisible.

Anonymous: Mine was super alert and super sensitive to other’s emotions. He was very easy going as a baby. When he hit 3 it all changed !!!!


How passive were they really?

Louise: I’m wondering about [the supposed PDA trait of] speech delay now. My son went from not speaking many words to talking in sentences, pretty much overnight, and it was clear that he understood a lot of what I said prior to that. Maybe he just didn’t feel the need to speak more when he was younger? I suppose you could call that a form of passivity?

Sally Cat: My daughter said words, and even a phrase, before she was one, but never repeated them again until she was way, way older (like three). My sense is that she chose not to speak

Louise: Maybe because they felt understood and looked after enough.

Sally Cat: My mum told me I could name all my colours by the time I was 9 months old. I can actually remember this (I have exceptionally clear early years memories). I was in rapture over the colours of plastic beads on a bar across my lap in my pushchair. They were so very, very beautiful to me. The colours glowed like gods or something. I struggled to pronounce their names (red, boo, geen, lello) because I loved them so very deeply.
My mum then set to enthusiastically teaching me obscure colour names (she's trained as an artist). My older brother enjoyed showing off the obscure colour names he could get. I felt unable to engage, like I just couldn't learn them. I muddled "vermillion" and veridian" in my head. I still cannot memorise obscure colour names even today as an adult who loves colour. I think my PDA avoidance is at play

Louise: I think that’s why I struggle defining passive. Because it’s not like our minds aren’t working a lot when we’re infants and very young children, and it’s not like we’re incapable of some pretty amazing things at times. Obviously there must be environmental factors at play as well.

Kay: I had this with the youngest the day after doing his EQA questionnaire about a month ago! He literally said about 5 words (all repetitive)he  had over an hour’s conversation to do this bleeding assessment thing and got up the next day, phoned my mum and he was all like hi nanny, how are you? What you do?! Little wotsit. I was too gobsmacked to actually make a fuss luckily and I've just carried on like it's normal because god forbid I show I'm excited about anything he does! He likes me scared


Trancing out

Sally Cat: When my daughter was a tiny baby she used to get extremely fixated on certain visuals (like beams of light shining through our thick bedroom curtains, and a colourful mobile we had hanging in the living room). We had to give her medicine for a neonatal condition, and she'd try and bat the oral syringe away from her mouth every time, and she was only a few weeks old.

Miranda Jacobs: I don't have children, but I've been told I was a "disappointing baby" by my mother. Apparently I didn't react if they made faces at me & jabbered away, but when they stopped I would cry. Also I really liked the wind - turning my pram into the wind would calm me, or if my mother ran down the slope to the underpass to get a good breeze going into my face!!

Jazz Spree: Miranda, my daughter absolutely loved the wind too, and I would stand for ages on the end of a pier with her in my arms, facing into the wind - it was almost like she was gulping it. She has also resented her sibling from the day she arrived and, on that very first day and ever since (ages are now 13 and 10) she will not go to bed "before the baby does" and other such controlling statements - and meant it.

Miranda Jacobs: Jazz, sounds so familiar!

Sally Cat: Funnily enough, my daughter loved the wind as a baby and toddler. well, she hated going outside for her first four months, and I had to keep her really bundled up with a scarf over the hood of her pram so she didn't scream her resistance as much. Then, by about 7 months, she started loving the wind... and hail.



Babies who weren’t so passive

Lucy Holt: Her first word, at about 6 or 7 months old, was ‘NO!’ It was cute at the time, but we should have realised what was to come! Her older siblings both said cat as their first word, followed by the usual mummy, daddy etc. She was definitely the most stubborn out of the three!

Kirstie McCrory: Pick me up, not like that, put me down, not like that, hold me, don't hold me, touch me, don't touch me, I want to sleep, no I don’t, yes I do, look at my food on the floor, pick it up for me, no I don’t want it , pick it up again, again, again.

Josie Louise Ward: With my youngest I was able to see PDA signs from very young as I already had experience with my older PDAer. When he was 7 months old, he would instantly get extremely angry if we ever took something away from him (playing with something he shouldn't have). He would throw himself back in a tantrum and scream and I remember being really surprised. Then continued the other signs like hating nappy changes, would fight getting into his car seat, push chair etc. I don't miss those days LOL.

Jessica Fox: After an initial few days of appearing detached and in his own world just staring at shadows and light on a wall my boy’s character became apparent. I called him a “high needs baby” because he needed all my attention at all times and screamed when I put him down. He wouldn’t sleep without being in physical contact with me (this continued until he was 4 years old.) The only time he would be put down was on his baby gym where he appeared to do a workout every morning hitting and kicking the dangling toys in what I called “the golden hour” because it was a short window where I could get things done. He was very physical, highly alert and very demanding. He knew what he wanted and was determined to move around and explore the space around him.
At 5 months he began crawling, backwards at first then forwards, and getting into everything and climbing furniture. He walked at 11 months with no toddling or falling over, he just went from pulling himself up on the sofa to walking confidently across the entire room like he’d been doing it forever. I knew he was different to other babies very early on, at baby groups he didn’t sit contently and play he explored with a sense of urgency and found different uses for toys than the other babies did often using them contrary to rules or social expectations e.g. climbing into water trays or moving toys from one area to another.
I caught him practicing facial expressions, happy and sad, in front of a mirror when he was about 18 months old and thought at the time that the ease at which he did so looked possibly manipulative or at the very least performative, like he had worked out a way to get what he wanted. He knew what was being said to him from a very young age and was very strong willed and communicated his own autonomy despite not progressing beyond linking two words together until he was two and a half. At that age he began speaking in full sentences with amazing vocabulary, inflection and over-exaggeration, like he was performing in a play and needed to enunciate properly to capture the audience’s attention.

Maggie: Oh! Daughter did also really NOT like me sleeping!
Would wake up, sing like a little Gremlin and stare into my soul from her crib/the bed next to me (depending on whether she was bed-sharing with me that night or not) and just....high pitched cooing noises until I woke up. kicking her little legs and flailing her arms around ... as she got a tiny bit older she'd poke my face repeatedly and pull at my ears and hair and stuff too.... and these high pitched noises that went right through me.... til I woke.. brief interaction with her...then she'd turn her face away and go to sleep!! Just like that

Demand avoidance and freedom need

Alana Neimanis: I thought my son couldn’t sit up by the age of 8 months old and was so worried until I realised while leaving him alone in his cot and watching from the door semi-closed that he could perfectly sit up he would just not do it in command! When I thought he wasn’t hitting a milestone he was plain refusing to sit up every single time he was asked, it now makes me laugh when I reflect on those years like what would drive him to refuse sitting up oh cheeky monkey it was so rooted in him of course pda makes a lot of sense now.

Kay: Yup, hated getting dressed if asked but was happy to play with clothes, refused to walk if enticed but would of his own accord, wouldn't get in a buggy but wouldn't stay out of it.

Struggled to breastfeed him but would grab for boob all the time.

Would spit his dummy out if given to him then put it in himself.
Would scream about the lights being on but would cry if I turned them off (once he could do switches he was fine)

Loved doing art but if I got it out he would cry lots, wouldn't take finger foods offered but would take the same thing off of others plates.
This is all the same for my youngest also, only me and the youngest have this huge issue with using my boob as his comforter, if he shoves his hand down my top without me noticing its fine but if he asks I get super tense but if I offer it he will refuse and smack me but then lean in and take it 5 minutes later.

If I say don't climb, they will or would climb.

Won't eat at a table with everyone else if it is stated it is food time but if food is just left he will eat it at his own discretion.....
The list is endless

Sally Cat: As a little baby, my daughter was determined to get her feet out from under her pram cover. She was so pleased with herself when she finally succeeded! She also refused to wear hats and mittens etc.

Adira Restless: I mentioned my PDA son above, but just thought of a good example for my PDA daughter. No one's ever been able to get her to do anything she didn't want to do. She started child care at one and I very quickly got comments like "she's very stubborn, isn't she?" She has also always refused to wave or say hello or goodbye to people - instead turning her head away in a huff. As a baby her favourite word was "No". Now at 3 her favourite thing to say is "I'll just do whatever I want to do"


People focus

Anonymous: I was so used to looking after sensitive babies having one of my own seemed the norm. She was a right Velcro baby. Very interactive to a degree she would command communication at all times. Loved people and not shy. Very smiley happy baby, if her needs were met. I was on my own a lot as Dad was in the services. Comfort breastfeeding was common. Preferred a long feed at night as during the day she’d stop and start. I realised I’d never be one of these out and about mums shopping as public breastfeeding was a bit too public as she was so nosey she’d stop and leave me exposed. Long walks in the baby carrier so she’d sleep during the day.
As she grew older she became more reserved with people apart from close family and chosen friends. Refused to speak to nursery staff so environmentally mute. Despite being in crèche before and a very popular playful baby.

The older and more aware and less in her home environment the more demand avoidant she became. Refusing to get dressed etc she was fine with hair washing etc then suddenly her sensory issues came on strong. Anxiety increase was the root cause. Separation anxiety from her constant me was very obvious to everyone . Her Dad was in and out of her home life till she was 13. She missed him dreadfully from a young age. When he did become a civvy. She missed when it was just her and I for periods. She was more controlling over me when Dad was away and demanded more.

Sally Cat: We regularly travelled on a branch line train, and she used to love being held up in the air and getting gushing attention from fellow passengers. One day, however, the carriage was deserted apart from a group of four young people sitting at a table seat immediately across the aisle from us. She kept leaning towards them expecting attention, but they failed to notice her at all. She became incredibly upset and angry and it was very hard to distract her and calm her down.

Anonymous: From very young my second baby knew exactly what she wanted. From about 4 months she'd be in your arms and suddenly lunge her whole body away, so that she'd fall unless you moved to catch her. This was her way of driving the human that held her to get where she wanted. She'd also turn our faces to make us look at her. Under 6 months old she'd know where anything was that I'd lost, which is an indication of how hyper-aware she was of her environment. From my arms she'd lean her whole body to where the item was and steer me there. She never slept for more than 20 minutes in the day. It felt like that was the most she could allow herself away from watching everything. Later, when she could talk, whenever she woke she'd deny she'd been asleep at all, which I now recognise was to do with needing to be in control, and how being asleep is so out of control. Weaning was all on her terms. She started grabbing food out of my hand or off my plate from 4 months, but refused to eat any prepared baby food when offered at 6 months. She wouldn't engage with weaning at all until 8 months, at which point she went straight to having a full plate of whatever everyone else was eating.

Miranda Jacobs: I don't remember this but I've been told I would stand in my cot & rock it forwards & backwards, so the feet banged on the floor & shout "Susan-Mummy, come into the rooooooom!" until she did!
Also I have a strong memory of the light coming through my bedroom curtains & making patterns on the wall. I would have been no older than 3. I remember hating that I was having a baby sibling when I was told. I was 2 1/2 when my brother was born & I resented him until he was about 30!!


Anxiety

Mandarin Snap: My daughter was really jumpy as a baby, she would jump even when someone walked past her. Wouldn't let me leave her side for the first 6 months and always had extreme reactions of fear to animals and I have a toy dog that sings and wiggles which she was terrified of. She has always reacted badly to being told off, even gently to the point where she can't breathe properly.

Sally Cat: When my baby was just just a month or two old, she had episodes of seeming completely terrified of something neither myself nor her dad could identify. We could best describe it as her seeing scary ghosts. It was very peculiar and disturbing!
When she was a bit older, if we took her into a baby change room with a big mirror mounted over the changing ledge and she saw our reflections in it, she would panic hysterically. She would be absolutely terrified! I learnt to place my satchel between her and the mirror so she couldn’t see it.


Restlessness

Florence Castle: my PDAer has an older ADD brother, so I had another baby experience to compare to. They each had their own "settings and preferences" ... not gonna use the word 'normal', cause, we don't think that's a thing in our house. My PDAer was more restless - seemed to have more energy in her body, took longer to fall asleep, and generally slept less. My ADDer fell asleep in 5 minutes, and did not drop his nap until he was nearly 3. my PDAer took longer to settle even when it was a regular sleep time and she was tired. She dropped her last nap much earlier at 18 months. my PDAer also liked less touch. I'm an attached parent, the product of attached parenting, and my instinct is always cuddle, hold, hug...especially when in distress. While MissPDA does enjoy a good cuddle and to this day will come to me for them, I generally noticed when she was a wee one that she liked less of that than her brother had... luckily the instinct to hug also comes with an instinct to notice when when it's not wanted, so I would always ease back and let her dictate. to be clear she did like contact, she didn't avoid it completely, just liked less... and more 'being next to' versus 'full hug'...


Feeding issues

Dany: Yes. Breastfeeding totally on her terms- at one stage would only feed if I lay down. Wouldn't feed if I needed her to. Wouldn't eat solids/ purees until literally starving at 11months as I was pregnant and milk reduced. Only would sleep in PITCH black. Had to have movement in a sling to go to sleep. Refused buggy. I put it down to her being a highly sensitive child. She was happy though.

James McGee: yes. very, very clingy, overly sensitive to surroundings and my mood, and my boys at least avoided the demands of being fed any time it wasn't wholly in their control. yet, when we were in public, at least from 6 months on a complete 180 from their temperament at home.

Anonymous: My daughter never slept during the expected times and always needed contact and movement to feel secure. We had real issues with feeding and ended up on a lactose-free milk for a while but she's okay with milk now, so not sure what it was really. She wasn't fussy with solids, and happy to try new things. She's always hated being away from me in particular and the return of any absence from 18m or so up was met with either complete indifference like I wasn't there, or a few good hits and the odd bite before having a big cuddle. She was always a bitey child
I posted a video on my profile a couple of days ago of when she was about 2 1/2 and my son was about 6 months and in his swinging chair (which she would climb in as much as possible and refuse to get out for him). She's leaning over looking at him and being nice, I asked her if she loves him.. NO! I ask again..NO! But she leans over and kisses his head with a grin. Sassy from day one

The Impact of Co-occurring Conditions


Rachel Sylvania :  My son was a very passive baby but, he had the added extra of being born with a cleft palate and thus, severe glue ear which made him effectively deaf until he had grommets fitted at age one.

He certainly didn't cry a lot unless food was involved.

One thing, looking back, that he has always had though is a sense of urgency. This became especially apparent at preschool age but thinking to his first 18 months even then he was sort of urgent. Lol

Anonymous: My son was a screamer he slept and refused his first feed for over 24 hrs after birth but then he refused to sleep for like 11 years and screamed a lot, However was it PDA, sensory, ADHD, pain from his EDS, I don't know.

Anonymous: Hard to say if there were signs of PDA because also ADHD signs were present.

Did not want to leave a place he was not ready to leave (park, playing with other kids), I usually waited for the other parent to take their kids first. Car seats.....a nightmare!!! So many toys and mobiles to entertain all the time. But he did not want to go in.
Constantly needed attention and new toys. Needed new stimuli. I would pick up a toy from the store, let him play with it while I shopped and put it back when we were done and he was all good. Never ever ran out of energy. Ever.
Delayed sleep phase as well. He was a hard baby looking back, but he was my first so I had nothing to compare it to. I just kept thinking "how do people have more than one kid!!!!" Most signs of PDA were not present until school years.


Thursday, October 7, 2021

PDA masking in detail

I’m an adult PDAer author, advocate and artist who masks, and who has a ten-year-old PDA daughter who masks too. 


This blog article explores PDA masking:

  • what it is
  • why it is carried out
  • whether it is more common for PDAers than “general” autistic people
  • whether masking is a universal PDA trait
  • what are its benefits and costs

What is masking?
Masking means hiding true feelings behind a display of emotions we don’t really feel.  Often the masked front presented will be one of happy calmness hiding internal stress and anguish.  Sometimes also gentle emotions may be masked with aggressive ones. I had a very interesting conversation recently with a trans PDAer who said that, when trying to be the boy she thought she should be, she acted tough and aggressive, and that this had felt empowering until she realised she didn’t want to be like that; that this was not her authentic self.

A form of masking is social mimicry. This means copying other people’s words, mannerisms, and body language, etc. This may often be to fit in and get along with people.

I often find myself automatically adopting the accents and mannerisms, etc, of people I’m talking with.
 

What do people mask?
This, I think, is a very important question that's worth examining in detail.


 

Forced masking
The word “masking” has become synonymous with autistic oppression and injustice.

Masking is commonly viewed as learnt, forced oppression which can and should be cast off so that autistic people can be authentic and free.

Forced masking is unnatural

It's about autistic people being bullied into hiding their natural differences so they act like neurotypical people

An example of forced masking is ABA (Applied Behaviour Analysis) which has been proven to cause long-term psychological damage including PTSD and tics

This is the type of masking people think of when they talk about “dropping” masks.
 

Why else might people mask?
I, however, believe masking to be more multifaceted than this.

Yes, I think it can be an evil forced onto autistic people in order to suppress our natural, true selves,

BUT I don’t think this is always the case

I think sometimes, we may instinctively wish to mask, and that doing this can even –shock horror!– be healthy and positive (we’ll come back to this).


Hiding vulnerability
I witnessed what I believe was instinctive, rudimentary masking in my daughter when she was a toddler. As soon as she was able to communicate it, she fiercely denied being hurt or upset.

For example, if she painfully bashed her head so blood was streaming down her face, she’d be upset if we tried to comfort her, and insist she was OK.

This was really hard to parent because my entire instinct was to soothe and comfort her, but trying to do this caused her to panic and become even more upset.

I learnt in the end to calmly open my arms wide without making an issue out of it so she could come to me for a cuddle without her pain being acknowledged. I’d like to clarify that we, her parents, had never disapproved of our daughter displaying distress.

To my mind, her determination to hide her pain came from an instinctive drive to mask her vulnerability.



Animal masking
If we look at animals, we can see that this type of masking is a common, natural drive.

We keep pet rabbits, and our vet told us that rabbits, as prey animals, instinctively hide pain and stress so they don’t appear weak.

A vet’s website says:

“hiding pain is a behavior animals developed long ago in the evolutionary process. This was necessary to protect themselves from predators during times of injury or sickness. Even though they’ve been domesticated for thousands of years, this adaptive advantage has remained ingrained in our pets to this day.”  URL: https://grandvalleyvet.com/pet-pain-why-animals-hide-it-and-what-you-can-do-to-help

I can relate to having felt I must mask my pain for no reason I can retrospectively identify.  An example that comes to mind is when I had a new job starting in a bar in central Turkey (a place that had become my second home). The night before I started this new job, I bashed my toes on the step of a stone stair so hard that they went black and swelled up. Instead of telling my new boss that I couldn’t walk or stand without massive pain, I pretended to be fine and hid my difficulty. In retrospect, I know he’d have been sympathetic if I’d told him I had this injury. But my instinct had been to hide it.

Another example: as a child, I was in the school playground during a break and had a pack of square chew sweets for my snack.

One stuck in my throat.

It was agony. I struggled to breathe and panicked that I couldn’t swallow it ever, but my instinct was to act like I was fine so no one would know I was distressed.

I eventually managed to swallow it, but I masked my relief as well. I just hadn’t wanted anyone to to spot that I’d struggled.


Instinctive process

So in addition to forced “bad” masking, some masking is instinctive behaviour, that’s actually carried out by animals.

This type of masking can’t just be “dropped” in the way that people assume ALL autistic masking can and should be.

If it’s a natural instinct (like blinking if something comes towards our eyes) how can it be “dropped”?

And how can it be “healed” if it wasn’t caused by trauma?


Masking as a communication aid
I believe that the social mimicry aspect of masking can serve as a vital communication aid for those of us who lack intuitive wiring to know what to say and do to connect with others.

I respect that many autistic people have no desire to mimic others so as to communicate with them. I’m not judging right from wrong, but I do know that I, personally, have a desire for my communication to “succeed” (as in the person I’m speaking with correctly interpreting what I’ve tried to say).

I relished the tutoring I had in training as a person-centred counsellor because I got direct, informed, expert feedback about how effective I had been at communicating empathy, genuineness and positive regard.

I’d like to add that, for me, I do not naturally know how to communicate my true feelings and rely on masking/mimicry in order to do this. This is different, I think, from trying to fool people that I feel other than I do. For me, I cannot naturally communicate what I really feel without masking. I’m aware that this might sound contrary. I believe my neurology lacks a level of social-reading capacity that neurotypical people possess. On top of this, I genuinely want to engage as fully as possible with people and embrace using tools that enable this. 

In this light, I think masking can be thought of as a natural drive (not always, but sometimes).

So, I think it’s important to bear in mind that not all masking is forced onto autistic people by others.

Masking as the only way I can communicate

This may sound odd, but I don’t think I can communicate with anyone, not even my closest family, without masking.

To me, this isn’t about being false, but about needing the interface of a mask in order to express myself.
It confuses me when autistic people talk about dropping their masks. I think, “how?”

I often hear people saying that they, or their children, drop their masks at home. Maybe they do, but for me, I think it’s more that I feel more relaxed at home because the masks I’ve developed to interact with my family members are so well-practiced and comfortable that I can carry them out on autopilot.

So beyond forced “bad” masking and instinctive masking, there’s a third type:

Masking used voluntarily as a helpful & desired communication tool

Whereas forced masking is clearly unhelpful for individuals,

And instinctive masking in neither good nor bad (it just is)

Masking that helps people communicate because they WANT to communicate must surely be thought of as a positive asset?

Is masking more common for PDA than general autism?
I believe that the commonness of masking is one of many things that differentiates PDA from general autism.

I gained my adult autism diagnosis in 2013.

I’d sought my diagnosis after coming across a female autism traits list and being grabbed by a description of social mimicry.

I felt a rush of relief that my life-long ordeal of being socially-driven but lacking the perception to know WTF to say and do to socially connect was finally acknowledged.

“What an unfortunate concoction of neurological wiring,” I lamented with passion, “for those of us fitting the female-pattern autism profile.”

But I then learnt that the majority of fellow female autistics seemed to view masking and social mimicry as evils they could and should relinquish for their personal well-being.

This confused me. As I said earlier, fellow autistic people’s view that masking and social mimicry are things neurotypicals would love us to carry out, but would be bad for us was not something I related to at all.

It wasn’t until I connected with fellow PDAers that I felt I’d found my tribe.

A tribe in which many of my peers shared my pained desire to fit in and get along with people, but keep messing up.

One of the many differences I picked up through chatting with adults identifying as PDA, and autistic people who didn’t, was that PDAers were more likely to view their masking as natural and instinctive, whilst “general” autistics seemed more likely to view masking as a harmful evil forced onto them by neurotypicals.

This prompted me to carry out informal peer research to find out if PDAers view masking and social mimicry as more natural and instinctive than the general autistic population do. 

The positive results from my informal peer research alerted Grace Trundle, a doctorate student from University of Nottingham’s Centre for Forensic and Family Psychology, specialising in PDA, to carry out formal research, which she published in 2020.

She presented her findings at a PDA conference I co-organised with Spectrum Savvy and Julia Daunt in Bristol. Excitingly, Grace’s findings confirmed what I had found through peer research: PDAers do appear to carry out more social mimicry and masking than general autistics.

Of 224 participants from a general population sample, there was a significant positive correlation between PDA trait scores and camouflaging scores. PDA scores predicted 37.5% of variance in camouflaging scores, compared to just 9.9% for general autism.

Why might masking be more common within the PDA population?
There are, I think, a number of areas to consider when exploring why PDAers seem to mask more frequently than the general autistic population.

Social interaction & communication difficulties
PDA, like general autism, entails experiencing difficulties with social communication and interaction.  

While some definitions of PDA describe our social understanding as “shallow”, I believe this to be misleading because I think we can be very perceptive and pick up things about people that others don’t notice.

However –and I acknowledge that other PDAers’ experiences may be different– I do own that I frequently miss nuances in conversations, and people have often confounded me by seeming to think I’m an idiot.


Social focus

A recognised trait of PDA is having a social focus (which may become obsessive).

Specific social focus is not a trait associated with general autism.

For me, I’ve always been drawn to other people, and felt a need to communicate and join in.

And I admit that I have developed obsessions about people. Sometimes cool social tribes, but mostly about men. My crushes have been traumatic for me because they take over my thoughts and feelings and don’t let me let go, even if it becomes obvious that the man in question is not interested.

I actually turned vegan when I was 18 (many years before veganism was common) in an attempt to occupy my mind with something other than the man I’d currently been obsessed with.


Fantasy & role-play
Propensity for fantasy and role-play is also a recognised PDA trait that’s not associated with general autism.

This has often expressed for me as immersive daydreaming, but I also enjoy imagining I’m in a certain role when carrying out physical actions. 

For example, I may imagine I’m making a YouTube film when cooking a meal, or I imagine I’m staking a place out if waiting for someone.

Some of the untruths my daughter tells seem to have been rooted in her immersive daydreaming. I think for her (and I can remember doing this too as a child) she has a need to communicate and be listened to with interest, but she places no value on whether what she says is real or imagined. In fact, I think invented “facts” are more comfortable for her to share because she is in control of the information so can present herself to us as the peer-popular child she wishes to be.

So, I think this connects to masking. 




PDA traits that make masking likely

  • Social interaction & communication difficulties
  • Social focus
  • Propensity for fantasy & role-play

Combine to make masking likely.

Our social interaction & communication difficulties frustrate our natural social focus, but we can use our ability to role-play to compensate.

Masking enables us to carry out the social interaction we want to do, but otherwise can’t.


PDA anxiety
Another core trait of PDA is having very high anxiety.

In talking with fellow adult PDAers, many, like me, were unaware that they experienced anxiety at all because it’s their normal state.

Just like people tend not to notice their breathing.

PDA anxiety is not something that pops up out of the blue so we notice its arrival,

But something that’s been with us since we were born.

And it never goes away.


Fib response
Parents of PDA kids frequently talk of their children fibbing, even if caught red-handed. My own daughter does this, as did I as a child (and younger adult).

Being caught and cornered caused me massive panic, and my default defence was to lie in order to try and save myself.

Fibbing has recently been proposed as an alternative protective adrenaline response to the better-known trio of Fight, Flight and Freeze.

This is certainly what my fibbing-when-caught felt like for me: my fibbing was driven by overwhelming panic.

According to an article in the online ADHD magazine, ADDitude Mag:

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.
URL: https://www.additudemag.com/why-lie-adhd-fight-flight-freeze


Fawning
Like Fibbing, Fawning has been proposed as another adrenaline response to sit alongside Fight, Flight and Freeze.

This is where we seek to please others and put our own needs last in order to feel safe.
According to a drug rehabilitation centre’s website:

Fawning is a response marked by people-pleasing behaviors, conflict avoidance, unable to find one’s voice or ability to stand up for themselves in the face of a threat, and taking care of the needs of others to one’s own detriment. URL: https://www.ashleytreatment.org/learning-about-stress-responses


Many adult PDAers describe Fawning as their default adrenaline response, often adding that they hate it.

I myself often default to Fawning and slip into assuming others are right and I am wrong and that my needs are of no consequence.

Fawning is thought to develop from childhood trauma if neither Fight, Flight nor Freeze were effective self-protection strategies.

I believe that we PDAers, having naturally high anxiety, can feel traumatised by things that might impact others less.

The term was coined by Pete Walker, a C-PTSD survivor and licensed marriage and family therapist specialising in helping adults who were traumatised in childhood.
URL: http://www.pete-walker.com/codependencyFawnResponse.htm 

With relation to PDA masking, I think the Fawn response may cause us to wish to be like others and hide who we truly are because we believe we’re not good enough.


Funster
Yet another F adrenaline response is “Funster” 

This is where adrenaline triggers people to cope with social stress & anxiety by playing the clown.
The Funster response is not well-documented, but it's something I'm very aware of having reacted with personally; noticed in my PDAer daughter; and which fellow PDAers, and parents of PDAers, have strongly noticed too.

I can attest that when I've been possessed by what I think of as the Funster mode, this has been when I've felt intense social anxiety. My social panic has compelled me to take on a fun, joking, clown persona that I've not felt in control of. For example, when on holiday with my best friend and her boyfriend (who I didn't feel relaxed and confident with) I spent the duration of our shared time in full on clown mode. Consciously, I just wanted to make them laugh. Internally, I was in constant panic. I've been very aware of my daughter behaving like this in situations when we have people around she doesn't know well. After initially hiding and being mute, she transforms into a cheeky prankster who gains attention by naughtily annoying people (for example, climbing under the table and undoing their shoelaces). 


Internalised PDA
An uncounted number of PDAers, young and old, have internalised presentations of PDA meaning our meltdowns and other stresses are internalised (aka masked from view).

Internalised and externalised PDA are sometimes referred to as introverted and extroverted, but I feel internalised and externalised are better descriptors because they describe how we deal with our meltdowns, etc (pulling them inside, or letting them blast out).

Research and awareness has centred on externalised presentations. For example, the EDAq, to date the only scale developed to assess PDA, drops scores for PDA children who don’t try to control their teachers or peers.

Externalising PDAers will have obvious meltdowns, may avoid things loudly, and be driven by their natural PDA need for personal control to boss others around, such as other children and teachers in school.

Internalising PDAers will often seek to avoid demands quietly (for example, by saying thank you for a film recommendation, but never watching it). And we are unlikely to have bossed classmates or teachers around.

Internalised PDA meltdowns may manifest as irritability and irrational quibbling, perhaps lashing out with words that we know will wound our loved ones.

This is how my meltdowns manifest. It feels like I’ve been possessed by a demon with access to my my memories so it can use them to hurl hurtful, spiteful words at people. Ultimately, this meltdown demon wants me to regain a sense of personal control, but –ironically– I am not in control of my words or actions at this time. I witness my spiteful behaviour with helpless shame and horror, as if I’m watching someone else. I try to contain the explosive power of my meltdowns, but it’s like trying to write neatly while holding a pen with a boxing glove.

So, we internalising PDAers effectively mask our PDA traits.

We are not “less” PDA, but our PDA is internalised, and this can be thought of as masked.

Saying this, I’ve spoken with externalising PDA adults, such as Julia Daunt, who say they mask too.
 
I really do think this an area that’s ripe for research.


Hiding face to feel safe

Just as some of us feel compelled to mask our meltdowns,
Some of us feel horribly self-conscious and scrutinised if we’re observed doing everyday things. E.g.:

Walking into a garden when neighbours might be watching
Getting tearful watching a film
Being surrounded by a crowd, say in a shopping centre

This sense of vulnerability to other people’s scrutiny can be hugely distressing. Practical solutions can be:

Hoodies
Make up
Growing a long fringe

(Or just avoiding people all together!)


Masking & PDA control-need
The drive to want to avoid being seen can conflict with our natural PDA control-need (which is about having control of our own world, rather than of other people). Myself, and other PDAers I’ve spoken with, have responded to this feeling of unwelcome scrutiny by adopting attention-grabbing styles.
This way, we’ve felt more in control when we’ve felt stared at (People are staring at me because of how *I* chose to dress).

I “went punk” aged 16 and was very conscious of constructing an image and identity for myself. My punk image, including thick black eyeliner, made me feel protected and safe. I wouldn’t let people see me without my black eyeliner on.


Selective mutism

PDA kids (and adults), as for the general autistic population.

Both myself and my 10yo daughter are selectively mute. I am less affected these days, but my daughter remains very mute in school.

When I am stuck with selective mutism I feel verbally paralysed by what I think of as a “fear wall” that’s sprung up around me like a force-field so that I can’t speak to people. I hate its existence, but can’t shrug it off no matter how much I long to do so. I can set out determined to chat with people and forge friendships, but my f**king fear wall jumps up and immobilises me so I can’t speak.

My own experience of selective mutism has aided me in empathising with my daughter’s experience.
She doesn’t like to admit to being selectively mute, or to having any social issues at all, but things she has said have resonated deeply with me. And both me and her dad are very aware of the ultra-high anxiety she experiences if she feels caught out for being spotted as different from her peers.

She would panic and be confused if a teacher told her they can see she’s masking and doesn’t have to!

She wants more than anything in school to not stand out as different. (To avoid feeling scrutinised).


“Spare games”
This is a where a child runs around as if playing with other children in the playground, but it becomes apparent that they are not playing with anyone else at all if they are observed for long enough.

The term “spare games” was coined by a 9yo PDA girl Libby Hill met who was an excellent masker. Libby says she has since met many other PDA and general autistic children who do this.

There’s a risk that professionals will miss it and assume the child is playing with their peers and has no social interaction issues.

My daughter’s school SENco spotted her “spare gaming” when she was seven, and told us in a recent meeting that, now aged ten, she still does it. Staff have urged her peers to invite her to play, but she’s told us she prefers to play solo without the irritation of others.

I behaved similarly as a child, but my conscious motivation was to play despite the other children shunning me. So, I ran around imagining I was in woodland with tame deer, etc. I sometimes became aware that I might look very weird skipping around on my own. I think I then made an effort to make my gameplay blend in more with the other children.

My daughter also seems to be acting out her immersive daydreaming during her “spare games”, but her fantasies are about playing with her classmates. We were long confused about why she was coming home from school determined to regale us with blatantly fanciful tales about her high jinks with her classmates. It wasn’t until her SENco told us that she’s still engaging in “spare games” that I joined the dots.

Libby Hill has told me that the girl who coined “spare games” had, like me, been desperate to play with others in real life, but other “spare gamers” she’s met have, like my daughter, preferred solo play.

So, I think there’s a few points to consider here:

  • Professionals may fail to spot “spare games” and assume the child is socialising normally
  • Not all “spare gamers” want to play with others
  • “Spare gaming” appears to be linked to fantasy and role-play
  • “Spare gaming” may not always involve social mimicry and masking


RSD (rejection sensitive dysphoria)
RSD has been thought of as an ADHD trait

But many PDAers report being afflicted by it too.

It causes us to be certain people have rejected us

(despite lack of real evidence)

And feel heart-broken because of it.

Perceived rejection sits in my gut like broken glass

Refusing to shift no matter how much I try to rationalise it.

It can dominate and shadow my life for months, sometimes years.

The "fear wall"
Some PDAers I’ve spoken with have said that they, like me, feel permanently separated from other people, as if stuck behind a wall of glass.

This separating wall of glass prevents me from communicating my direct experiences to others.

It’s like I’m trapped in a bubble that I can’t break out of so that I can’t just be “me” and express myself freely and easily.

I think of this as my “fear wall”

The components of my “fear wall”
I suspect that a combination of innate PDA:

  • social interaction & communication difficulties
  • social focus
  • innate high anxiety
  • rejection sensitivity

combine to create my “fear wall”.

My social focus draws me to socially communicate

I feel extremely anxious if I perceive that my communication attempts have failed

And also crushed by RSD

But I lack the instinct of how to avoid repeating mistakes.

The toll of repeated failures triggers crippling anxiety when I’m faced with unfamiliar social situations: this is my “fear wall”.


Constructing my mask
Like all good actors, I have a repertoire of learnt lines, facial expressions & mannerisms, etc.
In other words, masking and social mimicry serve to satisfy my innate PDA social-focus by using my fantasy & role-play propensity to bypass my “fear wall”.

The masking I carry out is not about deceiving others about what I truly feel, but actually about finding a means to communicate my true, genuine feelings.  This might sound completely illogical, but please bear with me.

Fashioning a working mask of “communication life hacks” enables me to satisfy my innate social-focus drive to interact with others by bypassing my lack of social communication intuition, and poking a window through my "fear wall”.

Masking, in this light, enables me to communicate the things my fear wall has previously blocked. 
And mostly what it’s blocked has been my true, deep, innermost feelings. So –and this is a big “so” for me– masking is the only way in which I can communicate my genuine feelings because it enables me to break through that pesky wall of fear.


Masking as an extension of true identity
A 2021 research dissertation about PDA-specific masking by Stephanie Waudby, Psychology Masters student at Manchester Metropolitan University qualitatively assessed descriptions of masking provided by adult PDAer bloggers.

“Interestingly, the data from the present study shows that PDA masking can operate as an extension of true identity, rather than being in place of it.”

“Personal accounts from the blog data unanimously describe PDA masking as an instinctual, natural process that is often carried out unconsciously.
“Not everyone deliberately masks. Not everyone can control their masking or even realise they mask at all. This is what my masking is like.” (DS1)
“It feels like an unconscious, automatic process. It’s like I’m always behind glass. I can’t just switch it on and I don’t think I can ever fully switch it off at all.” (DS3)
“I have an instinct to bend my being (mannerisms, expressions, gestures, vocabulary) in order to interface with whomever I talk to.” (DS4)
These statements strengthen the anecdotal evidence suggesting that PDA masking is not a strategy that is used consciously but instead something innate that can be accessed without awareness.”
URL: https://docs.google.com/document/d/1Iy_bzDJVPJ8BdCdLDgZHdztGYf5Y809SMKdC50xhPSI/edit?fbclid=IwAR19Nn57qkF7l6K6JqleuuOvMge_uamtHH6ifyblvIPr-Aach_QOFvRbSRc


Is masking a universal PDA trait?

Although masking seems to be more common for PDAers than general autistics, some PDAers say they don’t mask.

The only formal research carried out into this area that I’m aware of is by Grace Trundle. As we’ve seen, her 2020 study found that PDA scores predicted 37.5% of variance in camouflaging scores (compared to just 9.9% for general autism), but she points out:

“it is important to note that predicting 100% of the variance would be a perfect relationship (e.g. year of birth would 100% predict age), meaning that in the relationship between PDA and camouflaging, 62.5% of the variance in camouflaging scores is unaccounted for and thus other factors must be influencing the relationship.”

In other words, being PDA does not guarantee camouflaging (aka masking and social mimicking). Although I think it’s also worth bearing in mind that the scale Grace Trundle used to measure PDA was the EDAQ, which down-scores internalised PDA.  

There is still so much unchartered PDA territory to map!


What are the benefits and costs of masking to the individual?
 

We’ve seen that masking is entirely negative if forced (e.g., through ABA)

But can be unforced/instinctive

And be a communication aid the individual actually wishes to use

We’ll now explore some more benefits and costs of masking


Security

We’ve also seen that masking can be used to make us feel safe in the face of overwhelming social anxiety.

To use my terminology, it punches a hole through my fear wall.

Masking a calm, relaxed persona serves as a shield protecting me from scrutiny and judgement.

Without an effective, learnt mask, I’m confounded by tongue-tying social anxiety that leaves me horribly frustrated and mute.



Comfort

Having a mask I trust to be effective comforts me when I engage in social situations.

If I lack a repertoire of what to say and do, I feel very ill at ease. Masking therefore reduces my social anxiety. And even allows me to relax and enjoy the company of others.


Energy drain
Comforting as it can be, masking does tire me.  It’s like being on a theatre stage acting in front of an audience. It uses up a lot of mental and emotional energy.

Even time with my close family exhausts me.

I think this (along with the toll of endless, every day demands) is why I need much more quiet time than people generally need.

I need repeated stints of extended quiet time to recharge my “battery”.


Fun/entertainment
Fellow adult PDAers I’ve spoken with have said they sometimes enjoy masking . I can totally relate to this .

An example that comes to mind is when we went on holiday to Rabat in Morocco a few years ago. I researched acceptable dress for women. Aware also that Muslim women are expected to behave demurely, I thoroughly enjoyed dressing in loose clothing covering my hair, arms and legs and walking the streets in a demure fashion. The novelty of this role-play excited me.

I’d have soon hated it if we’d stayed there long enough for the novelty to wear off.


I actually yearn for opportunities like this, especially if I’ve had no opportunity to use one of my hand-tailored masks. 

For example, I’ve spent a lot of time in central Turkey, and taken great pains, despite my dyslexia, to learn Turkish.

Visiting the region always fills me with delight to be able to exercise not just the language I’ve learnt, but the specific mannerisms, social knowledge, behaviours, and talking style, etc I developed to fit in and get along with Turkish locals.

And I really do relish my connections with them.

I think I found the Rabat experience particularly thrilling because it allowed me to use many components of my Turkish-mask.


How is this different from a neurotypical person adapting their learnt reactions to better fit new circumstances?


Good question.

My thoughts are that learnt reactions are masks, regardless of neurotype.

Exactly what masking constitutes, I believe, is something that will benefit from further research.

I think neurotypical males represent a group that carries out more masking than others do (e.g., putting on a tough guy front). Whether or not this behaviour is learnt or instinctive is an area of often impassioned debate, but –I think–the fact remains that NT males mask heavily.

So, it’s not just about autism & PDA

And, as we’ve seen, masking is much more complex and varied than being about autistic people being forced to hide our true feelings.

Final recap
There are at least three types of masking, but 99% of attention has been on the bad, forced kind

However, not all masking is “droppable” or bad