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
















Monday, September 20, 2021

The F family of 7 adrenaline responses

Most people have likely heard of the Fight, Flight, Freeze trio of adrenaline responses, but there are four more F responses which are less well-known: Flop, Fawn, Funster and Fib.


I think knowledge of all seven F responses is important in relation to PDA (the pathological demand avoidance neurotype) because we PDAers are naturally prone to ultra-high anxiety. Our naturally high anxiety causes adrenaline to keep on pumping through our systems to trigger these responses. It may seem to casual observers that our F reactions are baseless and/or contrived to attract attention, but the underlying reality is that these behaviours are driven by blind panic, and we have no control over them.

So let's explore them one by one:

Fight is, perhaps, the easiest F response for people to grasp, because triggered adrenaline causes visible aggression. Happiful.com describe the Fight response as "Your muscles tense, you start to sweat, your heart beats faster – you act on impulse to save and preserve yourself. You fight."

Many descriptions of PDA focus entirely children whose default F adrenaline response is Fight. In fact, the only existing scale to measure PDA (the EDAq) down scores children who don't default to the Fight response. For example, #13 of the EDAq is "If pressurised to do something, s/he may have a ‘meltdown’ (e.g. scream, tantrum, hit or kick)." 

The Fight response has rarely ever kicked in for me in an unfiltered, externalised way. When it has, it's usually been motivated by my wanting to protect another person or animal, e.g., my daughter. I do experience Fight during meltdown, but I attempt to internalise it (like swallowing it all in) so it manifests as brutally cruel comments.



Flight too can be obvious because the experient simply runs away. According to medicalnewstoday.com the Flight response causes people to feel "like they need to leave a room or location." They elaborate, "A severe fight or flight response can become a panic attack. It can also trigger asthma attacks in people with the condition."

Harvard Medical School sum up the Fight and Flight responses:

A stressful situation — whether something environmental, such as a looming work deadline, or psychological, such as persistent worry about losing a job — can trigger a cascade of stress hormones that produce well-orchestrated physiological changes. A stressful incident can make the heart pound and breathing quicken. Muscles tense and beads of sweat appear.

This combination of reactions to stress is also known as the "fight-or-flight" response because it evolved as a survival mechanism, enabling people and other mammals to react quickly to life-threatening situations. The carefully orchestrated yet near-instantaneous sequence of hormonal changes and physiological responses helps someone to fight the threat off or flee to safety. Unfortunately, the body can also overreact to stressors that are not life-threatening, such as traffic jams, work pressure, and family difficulties.

I am more prone, I think, to Flight than Fight, and have a tendency to dash blindly out of busy shopping centres and discharge myself early from hospital stays. Employment has been particularly difficult for me because of this over-riding need to flee confinement.


However, as we've seen, it's not just Fight or Flight, because there are five more F adrenaline responses to consider.

The next best-known one is Freeze. A 2017 paper by Karin Roelofs says:

Freezing is a form of behavioural inhibition accompanied by parasympathetically dominated heart rate deceleration, fight-or-flight reactions are associated with sympathetically driven heart rate acceleration.

So, whereas heart rate increases during Fight or Flight, it apparently decreases when the Freeze response takes hold. 

My personal experiences of the Freeze response have been traumatic, with me feeling horrendously anxious, but totally unable to react. I've felt paralysed to the point that I've not even been able to move my head or eyes. I remember being on a school bus as a teen when boys mocked me, and I'd frozen so I couldn't respond to them at all. I felt powerless, and totally, horribly conscious of both my vulnerability and of their every taunting word. My Freeze response has been very debilitating when I've wanted to make friends with people, because I've found myself trapped within a wall of fear that I couldn't break through.

Now we come to the four lesser-known F responses: Flop, Fawn, Funster and Fib.

Flop is a response I, thankfully, have no recollection of experiencing. An easy-to-grasp example of the Flop response is fainting. Rape Crisis UK describe it like this:

Flop: similar to freezing, except your muscles become loose and your body goes floppy. This is an automatic reaction that can reduce the physical pain of what's happening to you. Your mind can also shut down to protect itself.
 

Fawning 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. 

 

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.

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. 

 

Dr Judy Eaton, one of the key PDA assessors and researchers, comments that, while she's very aware of people who ‘play the clown’, she questions whether this is an adrenaline response, arguing that all the other ‘F’s are seen in the animal kingdom. She suggests the Funster mode might be explained as a strategy to cope with not fitting in, and social anxiety. I think she raises some very salient points: 

1)  Do responses to social anxiety qualify as adrenaline responses?

2) Are all human F responses observable in the animal kingdom?

I think that this underlines yet another field of needed-research, but feel initially able to respond:

1) Social anxiety responses are, I believe, adrenaline-rooted.

I think it's worth considering that social anxiety can trigger root-level 'F' adrenaline responses. Is there any reason to assume that socially-rooted anxiety won't –to use Harvard Medical School's words– "trigger a cascade of stress hormones that produce well-orchestrated physiological changes"?

2) There's a school of thought that believes the complexity of human language has seeded complex adrenaline reactions (please see my notes on the Fib response below).

It, therefore, seems logical that human adrenaline can and does trigger complex, socially-adapted defense responses. 

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). But does this social clowning qualify as a true, pure F adrenaline response?  

 

 

Let's look now at Fibbing. According to an article in the online ADHD magazine, ADDitude Mag Fibbing has recently been proposed as an alternative protective adrenaline response to the better-known trio of Fight, Flight and Freeze:

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.

This is certainly what my fibbing-when-caught felt like for me: it was driven by overwhelming panic. The Fib response is even referenced in the EDAq (which, as we've seen, is to date the only existing scale to measure PDA). EDAq's #18 is "Denies behaviour s/he has committed, even when caught red handed."

When the Fib response kicks in, the brain responds to surging adrenaline by fabricating a lie. Parents of PDA kids frequently talk of their children fibbing, even if they've been caught red-handed. I'm conscious when my daughter fibs that she's incredibly, paralysingly anxious about the thing she's hiding, and know that direct confrontation would merely terrify her more. She'll already be learning lessons about not repeating whatever it is she's felt driven to hide. I feel it better to comfort her and let her know in general, unheavy terms that she's supported and loved.

I largely got over my own Fib own response as a young adult. Before this, it was one of my go to adrenaline/protection responses. If I felt accused and cornered, my automatic response would be to deny culpability. I'd make up desperate, creative stories. E.g., as a young teen, I was a smoker and went to the local shop to buy cigarettes. The woman behind the counter asked good-humouredly if I was over 16, or if I was buying them for my mum. I said they were for my mum, then heard - to my total, panicked terror - my mum's voice behind me saying "hello Sally!" I fled the shop (so Flight kicked in first) and ran home to beg my brother to lend me the amount of money I'd spent on the cigarettes so I could pretend I'd bought them for my friend. I asked him to back up this story, and ran up to my friend's house, only to find she was away on a school trip to London. I ran home again, still in total, blind panic. My mum said she'd phoned my friend's home number and her mum had said she was on that London trip. My mum coaxed me to admitting that I smoked, but there was no way I would. Never! Instead, I elaborated my lie by saying a mutual friend was hanging out in the flat downstairs from my friend's flat, and that our mutual friend had asked me to buy the cigarettes to give to this other friend, so she in turn could give them to her when she got back from London!

Returning to the concept of Funster, I asked Dr Judy Eaton for her informed opinion regarding its viability as a core F adrenaline response, in the light of Fib having been proposed as one. After all, both Fib and Funster comprise complex, linguistic responses to threat, which unlike Fight, Flight, Freeze, are not known in the animal kingdom. To recap the words of ADDitude magazine, "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." 

Dr Judy Eaton replied that, in this light, the proposal that Funster is a core-level adrenaline response does sound viable.






 

 

 

 

 


Sunday, June 13, 2021

How PDA avoidance is different from other types of avoidance autistic people may experience.

I've come across much confusion about what PDA avoidance is, with people assuming it's any avoidance experienced by autistic people. The assumption is often accompanied by spitting outrage at PDA's classification as an autism spectrum subtype. Autism, it is cried, should not be divided into subtypes. It's all one, homogenous thing, and subtypes are not just misleading, but destructively divisive. Assumed functioning abilty (e.g., "high functioning autism" and "mildly autistic") is all about how others experience autistic people, and not about our inner experience. Further, our ability to function may vary.

In this light, I can see where confusion about PDA comes from. PDA stands for "pathological demand avoidance", and is both the name of our neurotype (a distinct neurological difference), and a description of one of its traits (confusing already!) On top of this, PDA is classed as an autism spectrum condition. This can lead people to assume:

autism + avoidance + the negative adjective "pathological" = PDA

How dare theorists who aren't autistic brand autistic avoidance "pathological"?!

Collins Dictionary defines pathological as:

1. adjective [usually ADJECTIVE noun]
You describe a person or their behaviour as pathological when they behave in an extreme and unacceptable way, and have very powerful feelings which they cannot control.
He experiences chronic, almost pathological jealousy.
He's a pathological liar.
...a pathological fear of snakes.
2. adjective
Pathological means relating to pathology or illness.
[medicine]
...pathological conditions in animals.
 

OK... so I think this is the root of the spitting anger members of the autistic community have against the concept of PDA as an autism spectrum subtype. And, if this was truly what PDA is (autism + avoidance + the loaded adjective "pathological") then I'd be in 100% agreement that PDA does not merit classification as an autism spectrum subtype, and that suggesting it does is insulting to autistic people. I mean, who wants to have their avoidance labelled pathological?

Now comes a possibly shocking revelation: I, and the majority of the PDAers I've spoken with, embrace the term "pathological" for 100% describing the nature of our PDA-style avoidance.

But you can't want to have your rational avoidance labelled "pathological"! I hear some of you cry.

My answer is, no, we do not want our rational responses labelled pathological, but PDA avoidance is not rational (I'll come back to this).

It's been suggested that PDA avoidance is caused by autistic inertia (difficulty switching tasks), learned anxiety, trauma, sensory overload, and/or executive dysfunction (causing difficulties with remembering to start tasks, and maintaining focus on mundane activities). However, as someone who identifies as being PDA, while all these factors may indeed cause PDAers to avoid things, none describe specific PDA-style avoidance. PDA avoidance is something completely different: a very distinct "monster".

PDA avoidance is not autistic inertia. It is not learned anxiety. It is not caused by stress or trauma, and it is not a response to overload. And while all these things can paralyse us and make us additionally avoidant, they do not account for our innate "pathological demand avoidance". 

 



How PDA avoidance is irrational 

PDA-style avoidance is a force within all PDAers that says "no" to anything and everything, including things we'd enjoy, and things which would benefit us. It is with us 24/7 like a grumpy goblin sitting in our brains irrationally pulling our strings, like we're its puppet, to avoid every single thing we're presented with. PDA-style avoidance blocks us from fetching a drink when we're very thirsty and the drink we need to quench our thirst is easy to reach. It tells us that reaching that drink and consuming it must be avoided because it's a threat we must avoid. PDA avoidance makes us panic if we're invited to go to a place we've been longing to visit. It tells us the invitation is sinister, and sneakily operates our emotions to believe that bullshit. 

PDA-style avoidance is not learned. It's evident in tiny babies who resist every day "demands" such as feeding, or engaging with parents. PDA-style avoidance appears to be very much a genetic thing. It crops up frequently in families with a PDA history, and in family backgrounds in which children are well-nurtured.

History of autism spectrum clasification

So if PDA is not simply autism + demand avoidance, how can it be an autism spectrum condition? The answer is found through examining what the autism spectrum actually is: namely a concept entirely invented by the Diagnostic and Statistical Manual of Mental Disorders in 2013 when they published their 5th edition (more commonly known as the DSM-5), a diagnostic tool published by the American Psychiatric Association. That's it. There's no magical universal truth to the concept of the autism spectrum. Further, for the benefit of autistic people objecting to the concept of PDA because it's a definition invented by non-autistic people: well, so is the entire autism spectrum(!)

Prior to the DSM-5's 2013 publication, there were separate classifications for autistic disorder and Asperger's disorder (which was classed as having "less severe symptoms"). A third category, clumsily named "pervasive developmental disorder not otherwise specified" aka PDD-NOS, encompassed
developmental conditions impacting social interaction, communication and "imaginative activity and a limited number of interests and activities that tend to be repetitive." [reference

Edit for clarification following feedback: prior to the DSM-5, PDD-NOS was termed “Atypical Autism” by the ICD (World Health Organisation International Classification of Diseases). And, according to Phil Christie, who had worked alongside Elizabeth Newson who first identified PDA in the 1980s, "Many children with PDA might have fitted those descriptions. By 2011 clinicians were using the umbrella term 'Autism Spectrum Disorder' instead of Pervasive Developmental Disorder ... This reflects the shift in thinking today that PDA is best understood as part of the autism spectrum or one of the autism spectrum conditions." [reference]

"Autism spectrum disorder" was officially introduced by the DSM-5 in 2013, replacing autism disorder Asperger's disorder and PDD-NOS into this new umbrella category: behold the birth of the autism spectrum! 

Many members of the autistic community were delighted that the distinction between autism and Asperger's had been removed. As discussed at the beginning of this article, categorising autism according to apparent functioning ability was and is seen as unnecessarily divisive. All autism is the same and functioning labels should not be used.

The whammy hitting the PDA neurotype, however, is that some autistic people are now assuming that PDA (which the DSM-5 also classes as an autism spectrum condition) is yet another unnecessary functioning label which should be removed because it's all just autism... 

So here comes the big point: while I personally agree that categorising autism by functioning ability is neither needed nor helpful; the DSM-5's classification of PDA as an autism spectrum condition does not make it the same as the conditions previously classed as "autism disorder" and "Asperger's disorder". PDA is not a functioning label. Its arbitrary classification as an autism spectrum condition by neurotypical pen-pushers has not transformed it into "the same as all autism". I mean, I can see where people are coming from when they angrily shout that autism should not be divided into subtypes, but this is the thing, the invented "autism spectrum" has perhaps been constructed misleadingly broad. While "Asperger's" and "autism disorder", to my mind, 100% should have been reclassified into one, homogenous condition; PDA's inclusion here generates massive confusion.

So let's put this straight: PDA is only classed as "autism" (full, current classification invented by neurotypicals = an autism spectrum condition) because of the DSM-5. This does not mean PDA is the same as other conditions under the autism spectrum umbrella. These may very well be one and the same beast, but PDA remains distinct. And our PDA avoidance is not something everyone under the autism spectrum umbrella can experience. It's unique to PDA. I'm not trying to be elitist here. Believe me, our PDA avoidance isn't a fluffy prize anyone else would covet if they truly understood its nature. Neither am I being self-pitying: my PDA avoidance is what it is (like my eye colour). What I am though being is assertive: PDA-style avoidance is unique to PDA. Please, fellow autistic people who are not PDA, stop trying to claim PDA as yours. It's not.  



Friday, June 4, 2021

Memoirs of an introverted PDA child in a dysfunctional PDA family

[Care warning: this text contains a description of unpleasant child-blaming]

This is an excerpt from my autobiography-in-progress. I’m sharing it here as a blogpost because I’ve been asked a few times about what introverted PDA can look like in a child. My experience will not be same as other experiences of introverted PDA, but I hope my account provides a little bit of illumination onto how PDA can manifest in different ways.

While none of my family members in this account have sought PDA diagnoses, I believe they fit the neurotype too. My mother, Robin, has a different introverted PDA expression. While I have been more likely to fawn, she is more likely to blame others for life situations she can’t control and the roller-coastering emotions that come part and parcel with the PDA neurotype. 

In retrospect, I can see that my older brother Grant fawned to our mother in order to feel safe. 

It was only our step-father, Nathan, whose expression was extrovert. 

While it may be unpleasant for readers, I think my account of her scape-goating me is important to share because I have –alas– spoken with many fellow, introverted PDA adults whose mothers treated them this same way. In many cases, they have moved forward by cutting their mothers out entirely of their lives in order to escape their toxic conditioning. Some of us have succeeded in resuming acquaintance with our mothers with healthy boundaries established.




I’m on the second or third step of the stairs. Scant daylight reaches us here. We’ve started to play cautiously. Light catches the top of Grant’s cheek and the smooth, round, brown wood of the bannister knob. The ajar door to the backroom is behind him in my view. We are mindful of our every noise. I feel guilty to feel light-hearted. I sense Grant feels the same. The top of his dark brown hair looks black in the gloom. The play-bug takes over. We push each other and dart away. We giggle and shriek. Our sense of fun is irrepressible. It’s glorious to let go. We hear the breakfast room door open, and flinch. Letting go was wrong. Robin is hurrying to shush us.

Now aged six, the pattern of Nathan's bad moods has forged an ugly rut in my reality. I don’t recall when the pattern started. It’s gone on for years. But this particular scene has lodged in my memory like a black sticker pinned in an album.

We’ve spent long days tiptoeing. Not daring to raise our voices, because Robin kept reminding us in urgent hissed whispers that Nathan’s in bed in a bad mood. And we know he must not be disturbed when he’s in a bad mood because it detonates him into something much worse. So we’ve endured painfully silent meals with Robin fraught, and Nathan’s chair ominously empty. His red cushion with white dots plump and un-sat upon. We’ve ventured around the house scarce daring to breath lest we set him off like a landmine. We’d found solace playing with lego on the front room floor, but been unable to really enjoy it because of the overshadowing tension.

A nerve-jolting crash from upstairs tells me the next stage of Nathan’s bad mood has unleashed. Robin flees back to the breakfast room. Did we run to hide in the front room on this occasion, or brave the stairs (and closer to him) to flee to our rooms? We often ride out his terror-bursts in our beds. Hearts hammering. Hands clamping pillows over our heads to try to block the decibels of his fury. And to make ourselves invisible.

I’ve never seen Nathan during his bad moods. He hides before his explosions, then I from him afterwards. But I know intuitively that his every crash, clash, smash and bellowed swears are designed for maximum impact. Like a silverback gorilla thumping the ground, he wants us to quail at his power. And, to give him credit, he has succeeded excellently at this.

Monster unleashed, Nathan kicks and hurls all in his path. Stomping thunderously like the giant in Jack and the Beanstalk, but lacking the slow-paced finesse of fee fi fo fum! He thwacks the tall chest of drawers outside my bedroom door. But doesn't pause. Fury takes him directly to Robin in the breakfast room. I can hear him bellow, “You’re neurotic, woman!” and “You stupid, fucking whore!” his spat words are punctuated by the sharp sound of smashed crockery. And Robin’s futile begging. “Oh, Nathan, Nathan, please!” Her helplessness is strangely exhilarating. His accusations oddly delicious. A glimpse of power greater than hers. Mostly though, I feel terror. He’s never attacked me (so far) but I’ve heard and seen plenty of evidence of his violence. Robin’s helpless cowering is, perhaps, the most terrifying thing of all.

Now I hear the activation of stage three of his bad mood patten: the reverberating crash of the front door marking his furious exit. Silence returns. My heart rate begins to slow, though I still scarce dare breathe.

At length I find the courage to creep tentatively down the stairs. but crave company and reassurance, but I don’t know if I’ll be welcome in the breakfast room. I feel excluded for some reason. I tiptoe quickly along the dark passageway. The breakfast room door is open a crack. The ceiling light isn’t on, but the room is brighter than the passage where I stand. Light from the backyard window picks out the warm hues in the cork tiled floor so that they glow. I can hear Robin and Grant talking quietly. They sound very cosy. This is the companionship I crave. I take a breath and step into the room. They are huddled together at the far end of the big table. Although the breakfast room is brighter than the passageway, it’s still gloomy so their figures are hard to make out. I sense them as a single mass. “Hello,” I say.

They freeze. Brittle silence replaces their companionable whispering. I sense that they resent my intrusion. My heart skips like a foot slipped on a loose stone. I must have done wrong again. I instinctively hide my dismay. I never want people to spy my vulnerability. I try to look calm.

Robin gives me her special look of fretful, veiled disappointment. I hate that look. She wields it as a knife that cuts me down to nothing, whilst simultaneously conveying loving, maternal concern that I should be spared the knowledge of how bad I am: of how much my clumsy thoughtlessness has hurt her. Again.

Her eyes tell me she wants to welcome me into her and Grant’s sanctuary, but it is hard for her to do so because I have wounded her so much.

Grant, for his part, raises his brow to signify disgust at my presence.

I honestly don’t know what I did wrong. Wasn’t it Nathan who caused all the trouble? What did I do? I surely had no power. But this is the thing. That ugly, uncomfortable, unwanted ongoing thing that keeps slamming me in my face: I cause huge trouble and hurt without knowing. Even strangers single me out for blanket rejection. There is something intrinsically bad about me. Not knowing what it is, and my not meaning to do it makes no difference. There’s a dreadfulness to me that I have no awareness of. And no control over. And it makes everyone reject me.




Relentlessly, the ugly-familiar stages of Nathan’s bad mood march on. We have now entered stage four. This stage is about having no money for food. Robin wrings her hands and laments her poverty. She can’t afford to buy anything because Nathan took all the money with him, including her family allowance that was meant to provide money for us children. Her mood is sad and splintered like a savagely kicked china doll. She tries to be bright about the meals she provides. To make out that they are just what anyone would want: omelettes flavoured with chopped herbs from the garden, and fried eggs with home-made chips and frozen peas. The concept of chips always excites me because I connect them with the glamour of fish and chip shops, but Robin’s chips are disappointing. Where proper fish and chip shop chips are light and fluffy, hers are dense and chewy. She makes them in a lidded stainless steel pan with a fitted, grease-stained basket that’s like a straight-bottomed sieve.

The fifth, final stage of Nathan’s bad moods is his homecoming. It takes place between three days to a week after his explosive exit. It begins with his wide-smiling, whiskey-scented return during which his focus is mainly on Robin, who needs much gentle comforting and reassurance. Me and Grant are left to our own devices, expected to keep ourselves respectfully quiet while they do their making up thing. After this, Nathan is genial and manic. His attention feels squirmily bright as if the last ten days of his bad mood and our poverty had not happened at all. He makes loud, clownish jokes across the dinner table. I sense that Grant too has difficulty relaxing into the good vibe Nathan dictates.

Robin has a new game (or, at least, I sense it’s a game, but I’d never dare say so for fear of being told I’d got it all wrong). Her new game is about pretending she eats only charred cinders because she’s selflessly given the edible food to me and Grant, and –on the occasions that he’s home– Nathan. We sometimes eat tea (our evening meal) in the front room on our laps while we watch telly. This feels both modern and excitingly liberating. Me and Grant often eat here unsupervised during Nathan’s absences. Robin makes us aware of her cinder-diet by coming into the front room on some errand or other errand while we’re eating our dinners, and just happening to be carrying an unwashed baking tray. She pauses dramatically in her task, with the baking tray angled so we can see charred food burnt onto it, and takes a furtive nibble. Then another. And another. Gobbling up the cinders as if she’s starving. I don’t know what to make of it, but Grant leaps to his feet distraught, and anxiously asks if this is all she has for her own dinner. Robin acts like she’s embarrassed, “Oh, I’m so sorry, I didn’t mean you to see. You mustn’t worry. It’s OK.”

“But is that all you’re eating?” Grant persists. His eyes are wide with anxiety. “You must tell me!”

She makes a show of deciding whether or not to confide in us, “Oh, I shouldn’t say anything to you. I don’t want you to worry.”

Her falseness screams at me like a stone in my shoe, but Grant is hooked, “You must tell us!” he pleads. I think I see tears in his eyes.

I spot a smile flicker on Robin’s lips, and a satisfied gleam in her eyes, but she hides both quickly behind a mask of helpless despair, “Oh, oh, oh, I really didn’t want you to see. And I’m really OK. You mustn’t worry.”

“But you’re eating burnt food!” Grant is unshakable in his concern, “you didn’t have a meal with us. Is that all you’re eating?”

“Oh, oh, I didn’t want you to know, but Nathan ran away with all the money and I can’t afford food for us all. But don’t worry,” she says with affected pluckiness, “I don’t need much to eat.”

I know it’s all a game in which me and Grant are her pawns, but dare not say so because they’d scorn me for being stupidly wrong and uncaring of Robin’s misfortune. And I hate being scorned. And being told that I’m wrong. And, besides, I’ve learned not to trust my intuition. I’ve been laughed at and scowled at too often, without once having been told I’ve been right. So I bite my tongue and embrace Grant’s anguish that poor, poor Robin is subsisting on cinders because she, being so saintly good, is sacrificing what little resources bad Nathan has left her for us.

“Robin is a wonderful mother!” Grant hisses when its just the two of us alone. His dark eyes are urgent, boring into mine. He’s said this before. I’m confused as to why he feels I must believe it. I haven’t questioned Robin’s value as a mother. I don’t, in fact, even think of her of her as a mother. Her telling us that saying Mummy is “yuck, yuck, yuck” when I was two or three taught me early on to cut myself off from thinking of her in that way. I know she’s technically my mother. Just like, technically we’re a family, but we refer to it as “the family” (not “ours”). So why is Grant so desperate for me to know Robin is a wonderful mother? I don’t even know what a mother should be like. I have, though, learnt that my judgement is unreliable, and that Grant knows much more than I do. So I believe him, of course. I just don’t know why he keeps feeling a need to remind me.

I get sharp pains around the sides of my tummy frequently enough for me to have named it. I call it the crab claw because it feels like my insides are being pinched by enormous claws. It hurts tremendously, but I can’t communicate this to Robin. If I tell her it’s the crab claw again, I sense she doesn’t understand what I mean. Worse, if I pick the wrong moment to tell her I’m ill, she makes me go to be early, and this is disastrous because it causes me to be stuck alone in my room wide awake for even longer than usual, so I feel extra isolated, alone and bored.

I feel bored a lot. Boredom that's like a physical pain bearing down and making the essence of everything around me feel grey and worthless. I play in my room hating the rough green carpet and the mess Robin is disappointed that I never tidy up. I am ashamed of the mess. I don’t know why I’m so useless that if I even think of tidying it I’m filled with blind panic and can’t bring myself to lift a finger to move just the smallest of things. I am just a failure. 




The sound of cooing wood pigeons outside is mildly hypnotic, but not interesting enough to entertain me for long. A story I read claims they’re saying “take two, Taffy, take two,” but, try as I might, the pigeons’ coos don’t sound to be saying this. Anyway, I prefer to make my own connections; to invent my own comparisons. But I can’t think of anything that the pigeons’ coos sound like. In the end, their repetitive noise just reminds me of my bored solitude.

I wander the nearby streets alone for something to do. The Blockhouse playground feels desolate and unwelcoming when I’m in it by myself. The rides, disappointingly, are not fun. And often there’s big children hanging around, and I’m scared of them, so I slink away. There’s a swarm of gnats that dance in the air above the pavement on a tree-shaded road leading up to the Blockhouse. Gnats are halfway in size between mosquitos and daddy longlegs. I know they don’t bite like mosquitos, and their legs don’t fall off like daddy longlegs, so they’re kind of OK. Their flying dance is compelling to watch. Their darting bodies glow gold-beige where caught in slanting sunbeams. There must be hundreds of them hovering in a ball of ceaseless movement, never colliding. Their darting dance endlessly combines to take up the same globe of space. I can walk through it and feel them tickle my face, but I prefer not to have them touch me.

I play with Britain’s model animals on the floor of my room, standing them up in sorted ranks. I feel compelled to single one out for punishment. I select an animal with spindly legs, and hold it before the others announcing its crime, and that it must be punished by having a leg cut off. I use the grotty old paraffin chimney stove Robin gave me to heat my room to execute its punishment. The stove has a metal swivel vent on its flat, round top. The guilty Britain’s model animal has its leg inserted into a gap beside swivel mechanism. It begs me for mercy, but my heart is hard. I close the vent and its severed limb tumbles into the paraffin fire below. Bad animal. Now you’ve learnt your lesson. An increasing number of my Britain’s model animals are now three, or even two-legged. I’ve become adept at propping them next to other animals so they can stand upright. Their mutilations depress me. Everything I have is broken and imperfect. It’s the story of my sorry life. I long to be like the other children at school, or the ones I see in TV adverts for toys, but I’ve come, sadly, to realise that I’ll always fall short of measuring up. The state of grace that enables the possession good things passes me over like water sliding off oil.

Another of Robin’s new games involves her saying sorry all the time. Her apologies follow just about everything she says. For example, if she says “I’m cooking toad-in-the-hole for tea” she says sorry, and I sense she wants us to respond a particular way, but it’s confusing because she doesn’t like being argued with. I follow Grant’s lead. He always knows what to say to make her happy. I listen and learn when he tells her she doesn’t have to say sorry. It’s actually kind of fun because he leads me to laugh at all the sorries she says for having said sorry when we’ve already told her she doesn’t need to (“you don’t have to say sorry.” Oh, “sorry!” ha ha ha). But it’s also kind of not fun at all, because she’s sucking all the attention and support into herself and away from me and Grant, and making it into a thing about how she’s weak and traumatised and needs us to comfort her. There’s a gap there where it would be lovely if she instead comforted me for how insecure I feel. But I can’t put any of this into words, even in my own mind.  

Fearful as I am of Robin’s disapproval, I’m not always passive and mute with her. Like some kind of mad want-machine, I’m driven by a force greater than my fear to press her relentlessly for objects of my obsessive desire. One of these is having a baby brother or sister. I love babies, and long for a family member who won’t dominate me so we could bond. I yearn for the comfort of close relationship. But Robin has repeatedly told me no. I’ve even hassled Sharon’s mum Margaret next door, “Why don’t you have another baby? Babies are so cute!” But Margaret has said no too. She says the ordeal of giving birth to Sharon, which took three agonising days, has put her off having another baby for life. I think this very sad. Babies bring joy into the world. I crave joyous things to fill the oppressive, grey-feeling boredom. I long for shop-bought food and the things people have in adverts on telly and in magazines. Every time Robin tells me I can’t have something, I want it even more. When her fierceness cows me into no longer daring to plead, I carry on secretly yearning. The force of my wants gnaws at me from the inside. 




In school the other children reject me. They stand around me in the playground telling me I’m bad. Things like “You smell” and “You speak proper, you do” (meaning my pronunciation and vocabulary is too fancy). Their combined gibes log in my heart as “You’re not normal.” I long to be normal, but feel powerless to be so. “Joey Deacon!” is another of their taunts, accompanied by savage mimicry of spastic arm movements and facial expressions. Joey Deacon was featured on the children’s TV show Blue Peter to increase empathy for people with a condition now termed cerebral palsy, but instead of empathising, the children in my school have turned “Joey Deacon” into an insult for uncoordinated weaklings, such as me. They pick me last for teams in PE (my least favourite lesson).

Queuing in the school playground one day waiting for the order to march neatly back into class holding hands with a child I don’t want to hold hands with, and who I sense dislikes me, I feel so overwhelmed with depression and despair that I contemplate stepping into my fantasy world and staying in it forever, never to face reality again. I am comfortable in my fantasy world. No one calls me Joey Deacon, or gives me cold looks at home for crimes I hadn’t known I’d committed. The idea of staying in my fantasy for ever feels tantalisingly doable. I could just step in now. It is there ready for me. There’d be no more rejection. No more stress at home. No more being made to lie alone for hours in the dark, then wrenched out of bed and forced back to school to go through all that same hell every day. No more being denied the wonderful things I want so much, which Robin says I can’t have ever. I’d be free and able to skip through the magical woodlands of my personal, secret idyll with tame fawns and other cute, friendly animals, loved by all and the centre of attention without any pain. I nearly walk in, ready to lock the door behind me, but then I remember Christmas, my birthday and Easter: the days on which Robin gave me things and everyone is nice to me. I love those days so much. The ritualised, dependable gift-giving is something I am attached to enough for me to decide, with a sad shake of my head, to stay in reality for (even though the rest of it is shit).




There is one other rare, good thing that I hold on for: chocolate cloud. Chocolate cloud is a dessert which Robin sometimes crafts from a lone hardback recipe book she keeps in the kitchen. She’s let us know that it’s horribly demanding to make. She has to go to the effort of melting dark chocolate in a bowl resting in a pan of boiling water to make chocolate mousse; whip cream to into a light, fluffy foam; toast flaked almonds so they’re golden brown (not burnt); and finally, having layered the components together in her mismatched sundae glasses, sprinkle grated Bournville dark chocolate on top. Oh my! Me and Grant nearly swoon for our love of chocolate cloud on the two or three times a year Robin creates it for us. Grant teaches me to eat it one third of a teaspoon at a time in tiny, sucked pecks. Savouring every delectable miniature mouthful so they melt on my tongue in bursts of creamy chocolate heaven. We love chocolate cloud with an almost religious fervour. There is nothing more desirable for us than it.


“I’m ill,” I tell Robin every school day morning when she comes to summon me out of bed. Grant, who shares my wish to avoid school as much as possible, has confided tips to me about how best to fool Robin. “If you tell her you’ve got a headache or tummy bug, so can’t tell because there’s nothing to see on the outside.” One of his more advanced strategies is to listen out for her approach along the passage, and rub his forehead rapidly before she comes into his room so when she feels his forehead it feels hot and she thinks he’s got a fever. He said he tried leaning his forehead against the lit bulb of his green desk lamp, but it was a bit too hot for comfort.

I’ve been refusing to wear clothes around the house for some time. Robin tells me to put clothes on, but I refuse. I just don’t want to wear clothes. Being naked is fun and makes me feel free. I like that Robin can’t control me. Even if she persuades me to dress, I can take my clothes off again as soon as sh looks away. I love running around the house naked.

In school one hot days, the boys take their shirts off so they’re just wearing their vests. This strikes me as an excellent idea, so I take my shirt off too. The other children stare at me wide eyed. “You’re not allowed to,” they tell me. I always hate it when I’m told I’m not allowed to do something. It feels kind of heavy and mean: a dark thing. And right now feels stupid. I point to the boys around me, “You’re not wearing shirts.”

“But you’re a girl,” they say, “girls have to keep their shirts on.”

“Why? That’s stupid.”

“You’re not allowed!” they persist, “Miss will tell you when she sees.” By ‘Miss’ they mean our teacher, Mrs Tregurtha, who is old with long grey hair that she wears loose.

I refuse to believe Mrs Tregurtha would say I have to wear a shirt just because I’m a girl. I ignore my classmates and go back to my work. It’s a writing exercise. It’s not long before I get stuck. I can’t remember how to spell the word ‘it’. I’ve always struggled to learn spellings. I have a longstanding habit of adding ‘e’s to the ads of words, just in case, because I can’t remember which words require them end, and which don’t. Mrs Tregurtha’s classroom has tall windows looking onto the lane leading to the school gate. Her teacher’s table is tucked against the wall opposite the windows, just up from the classroom’s door, which leads directly onto the varnished wooden floor of he assembly hall. Right now, there are about eight children queuing for her attention with sheets of paper clutched in their hands. I join the queue with my own worksheet dutifully held. I know the system. I must have my work with me and wait quietly in turn. I am also shirtless, and still receiving hissed reprimands from shocked children. I continue to ignore them, confident that no sane adult would allow boys to take their shirts off, but not girls. At last it’s my turn to see Mrs. Tregurtha. Her long, saggy-skinned face is framed by hair like creamy cobwebs hanging in thin, smooth, yellow-grey folds. She scarce looks up when she asks what my question is, but then double-takes, “Why are you not wearing a shirt?” Her disbelief punctuated by raised, downy brows.

My confidence gives way, “All the boys have taken their shirts off,” I explain, worried now that, for some arcane reason, my classmates had been right that girls aren’t permitted the same basic freedom as boys, and that Mrs Tregurtha will tell me off. Why do I always do wrong without realising?

“Put your shirt on immediately!” she snaps. No compromise.

I am defeated and put my shirt back on, but I still think it’s a stupid and unfair rule. Seeing the shirtless boys sitting and standing around me makes me feel humiliated and annoyed. But I don’t say anything.

I’ve long been annoyed that the children’s TV magazine program Blue Peter always has two male presenters but one woman. I think this unfair. Women shouldn’t appear less than men because half of humans are female. I’m even more angry at an ITV show called Rainbow which has no female main characters at all. They have a female-looking puppet, but they’ve made it into a male character called George. I refuse to watch it. Even Robin, who’s repeatedly made it clear that she knows everything and it’s everyone else who gets things wrong, assumes all toy animals are male. I feel driven to fight to make females equal. I focus on the unfairness that boys and men are allowed different positions for pooing and weeing, while females are expected to sit on the toilet for both functions. After consideration, I accept that it would be impractical and messy for females to stand up to wee, and pooing is best done as close to the toilet seat as possible. With pride, I innovate a revolutionary new way for females to wee into the toilet so that, like males, we have two toilet positions. Excited, I herd Robin into the bathroom and teach her my new girls-only weeing posture. “Sit on the toilet, now put your feet up on the laundry box,” I manoeuvre the white plastic box in front of her, “yes, put your feet up on it like that. Now we have a special toilet position just for girls and women!” Looking at her, it dawns on me that she isn’t actually that sold on my idea. Undaunted, I persist in weeing with my feet propped on the box for at last a week afterwards.