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.
...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.

Monday, May 3, 2021

When to tell a PDA child (young or old) of their diagnosis

I’ve often come across parents saying their kids have rejected their PDA diagnoses; as well as parents of adult children who outright refuse to consider the idea of being PDA at all.

I believe it best to be cautious about disclosing PDA (or other diagnoses) to PDAers. I’m not saying that information should be totally withheld, but that I think it’s important to bear in mind that we PDAers (both kids and adults) are likely to totally reject labels. This is a fundamental aspect of our PDA demand avoidance.

This is contrary to current autism best-practice wisdom, which states that children should be told of their diagnoses immediately because they will have already realised they are different to their peers, so concealing diagnoses withholds necessary information for helping them understand why they’re different.

However, I don't believe this is generally best practice for PDA kids. Although PDA is classed as as an Autism Spectrum Condition, it’s known that some autism strategies are ineffective, if not disastrous for PDA children. For example, adhering to familiar routines, and being explicit about what is required.

Similarly, adults suspected of being PDA are unlikely to accept being told of this. While few people (of any neurotype) would welcome being armchair-diagnosed by friends or family, I think we PDAers are especially resistant.

PDA is not “just autism”

The autism spectrum is an invention of the 2013 DSM-5, which has led many people to assume that everyone fitting the criteria for autism spectrum diagnosis is essentially the same; and that autism is all one, homogenous, indivisible thing, where one size fits all.

PDA misfits this stereotype. its classification as an ASC (Autism Spectrum Condition) does not mean that it is the same as “general autism”. Despite matching the DSM-5’s Autism Spectrum diagnostic criteria, PDA is neurologically unique. And it is this neurological uniqueness that, I believe, is of crucial importance when considering how to broach diagnosis to children. In other words, it’s not all “just autism”. Saying PDA is “just autism” because it’s classed as an ASC, is like saying basketball is the same as football because they’re both ballgames; or that the French language is the same as Italian because they’re both Romance languages. So, yes, PDA –despite being classed as an Autism Spectrum Condition– does not flourish under all the strategies that work for general autism; and disclosure of diagnosis, I believe, is a case in point.

While PDA children (such as the younger me) will likely be aware of having some kind of big difference from our classmates, there’s a strong likelihood our PDA avoidance will drive us to reject any labels we’re given. Being told we are autistic/PDA/or anything else is an imposed label. We PDAers need to find things out for ourselves. This gives us the vital sense of ownership we need to accept ideas as or own, and free from the crushing demand of other people’s opinions about who we are.  

My personal experience
I gained my own PDA diagnosis recently because I found out about PDA for myself, then really wanted to be diagnosed. A major, ongoing battle followed for me to gain my PDA diagnosis, but I refused to give up when told it was impossible.

Conversely, my ten-year-old daughter, Milly, has had a PDA diagnosis for half her life, but I have intuitively not told her of it. While this flies in the face of current autism best practice wisdom that children should be told of their diagnoses immediately, I sensed that telling her she’s officially labelled as qualitatively different from other children would distress her. Her PDA brain automatically resists being labelled. On top of this, she –like me– is a natural masker who doesn't want to be different from her peers. My intuitive response has been to talk to her about general neurodivergence traits when she's in the mood, using myself as an example, and giving her space to identify as and when she feels a connection to the things I talk about (e.g. masking; having difficulties knowing how to respond socially; and automatically wanting to avoid things). I am careful not to try to drive her to respond or connect. Additionally, I know not to tell her "you are X, Y, or Z" because I’m aware this would backfire, and she'd not only refuse to accept the label in question, but actively avoid it, meaning she'd lose any benefit of understanding of that aspect of her neurodivergent wiring. So my parental strategy for alerting my daughter to her PDA, and her broader neurodivergence, is to provide her with a ‘pocket atlas’ of neurodivergent conditions for her to refer to if she wishes, and put forward the attitude that difference is both normal and OK.

There is the sticky point that she’s unaware of her formal diagnoses. I’m not easy that she’s unaware of them. It troubles me a lot, to be honest. Had she initially been assessed for autism when older (she was three at the time of her assessment) my intuition might have been different; especially if she’d had major school or other issues she’d been aware of preceding her diagnosis.

What I urge parents to do is to tread very lightly when considering how to tell their PDA children of diagnoses. It might be that they’ll 100% benefit from knowing about them, or it might be that their PDA brains will totally reject their diagnostic label/s and it would be more effective to drip feed them information about PDA, etc, when they’re in the mood to take it in, and without explicitly telling them “this is how you are”.

We PDAers tend to need to find things out for ourselves so we have a sense of ownership.

Adults who might be PDA

I’ve come across many comments from parents, and other close people, who strongly suspect an adult is PDA, but are frustrated that the person in question refuses to explore the idea. I totally get the frustration of the people who want these suspect PDAers to explore their potential PDA, but also understand that they’re really not going to want to if they truly are PDAers. In a way, it’s a kind of litmus test: those of us who most resist PDA label suggestions may most likely be PDA because the very nature of our neurology prohibits accepting other people’s options about who we are.

What best to do? Well, I’m not a guru, but can give you my two cents. If you have an adult in your close family whom you suspect to be a PDAer who you wish to help (or, as is often the case, you wish to help yourself and other close family through their identifying as PDA), you’ll likely get nowhere by trying to press them into identifying. In fact, your active hope that they’ll identify as PDA will likely trigger their PDA avoidance to big time reject the idea for ever and then some.

What may be more effective is to quietly implement PDA strategies in your interactions with this person. There is a good summary of PDA strategies on this PDA Society webpage:

Tuesday, July 21, 2020

An Exploration of PDA Masking

This is the transcription of an animated video I made for the Positive PDA Virtual Summit 2020 on the subject of PDA masking.

Masking means hiding your true feelings; often seeking to appear calm and happy.
A form of masking is social mimicry, which means copying what you think are the right behaviours  to fit in and get along with people.

Before I get stuck in, I should point out that while many PDAers, including myself and Milly, do mask, some PDAers say they do not mask at all.
So not all PDAers mask.

Awareness that many PDA children mask, for example in school, has lately been growing. This awareness, to my mind, is of very high importance because, if educators, diagnosticians and other health practitioners are not aware of masking, and how extensive it can be, they will be bound to assume that the child has no real issues.

I had direct experience of this when my daughter Milly was assessed for ADHD last year. The local child development centre had updated her autism diagnosis to include PDA when she was five. I’d then requested them to assess her for co-occurring ADHD.
The clinician who assessed her pronounced that she could not be ADHD because her teachers had reported no hyperactivity at school, despite her extreme hyperactivity at home. She said ADHD traits cannot be masked, and her behaviour at home was due to autistic sensory seeking.
It took me a long time, but I eventually overcame demand avoidance and asked my GP to request a second opinion on account of the extent of her masking not having been considered.
One of the centre’s lead clinician’s phoned me in April and agreed that Milly needs to be reassessed by one of their team observing her in school. This lead clinician was aware that teachers are unlikely to be able to spot the subtle signs of masked ADHD. 

Masking school children, are therefore vulnerable to being denied support and accommodations, even if they have autism diagnoses, with or with out a description of PDA.
School staff are likely to focus their attention on extroverted children.
However, masked PDA kids, like Milly, are actually very anxious and stressed behind their masks.
I’ve heard of older masking PDA school kids who have attempted suicide.
Yes, these masking PDA children do need support.
They are not having an easy time.
Their PDA is not “mild”
It is merely hidden from view

I spent the majority of my school days locked in immersive daydreams and desperatety unhappy and depressed

Another major issue that can occur when professionals don’t understand masking is that if parents report their child being loud and unruly at home, perhaps having meltdowns, when they are mouse-like model pupils in school, professionals have been known to assume this is caused by bad parenting: “they are perfectly well-behaved in school, so if Mum says they smash the house up and scream when they’re in her care, it’s obviously her fault.”

Perhaps worse still, parents, especially mothers, can be accused of FII (fabricated or induced illness, the new term for Munchausen by proxy) and be harassed by social services as a result, instead of the PDA child being given appropriate support. This is really, really not good or remotely helpful.

Awareness and understanding of PDA masking is therefore, in my opinion, vitally important.

Now, although masking is not a universal PDA trait, it does seem to be a very common one, and, where it does occur, it is often to an extreme extent.

I believe PDA masking is qualitatively different to the type of masking that’s abhorred by many autistic people. I think it’s important for this to be understood.

As I’ve said, I’m a PDAer who does mask. Social mimicry was the trait that jumped out to me on a female autism traits list I saw back in 2013. I was shocked. I’d always done this, but never before seen it described as a recognised human behaviour. I realised, on reflection, that I fitted all the other traits on the list as well. I asked my GP to refer me for adult autism assessment, and was diagnosed a few moths later.

I enthusiastically sought fellow autistics to converse with online. I was highly confused to find that masking and social mimicry were considered very bad things that neurotypicals wanted autistic people to do, but that autistics hated.
How could this be? No one had told me to mask. My masking felt like a natural thing that I wanted to do. Yes, I was unhappy, devastated in fact, whenever I messed up socially (alas, a frequent occurrence) but it was me who wanted to learn how to improve my social communication.

I noticed signs of masked autism in Milly, who was 2 at the time, and succeeded in getting her autism diagnosed, despite her nursery manager and senior health visitor firmly opining that she was no way autistic (they knew all about autism) and that she was just shy.

I came across PDA at the time of Milly’s formal assessment in 2015. I realised PDA described essential parts of me that autism alone did not.

In meeting adult PDAers online - the only resource at this time for adult PDA was a Facebook group run by fellow PDAer Julia Daunt - I found I connected instantly with the community. I had never before integrated this well anywhere.

Following hundreds of hours of online chatting, both with PDAers and general autistics, I picked up that PDAers seemed more likely to consider masking to be natural, and less likely to think badly of it.
However, nearly all general autistics I spoke with, as well as a few PDAers, saw masking as an evil thing brutally forced onto them by unaccepting parents and society. They described it as exhausting, and unhealthy; unnatural. Many talked of having liberated themselves by dropping their masks.

This intrigued me, so I ran an informal study, which backed up my supposition that PDAers are more likely to see their masking as natural. I spoke to Grace Trundle, a forensic psychology PhD student from Nottingham University specialising in adult PDA.

She explored this through formal research. Her findings did suggest that PDAers carry out more social mimicry and masking than general autistics.

I believe there is much more to be explored with regard to PDA, and general autistic, masking, and am excited to say that I will be working with Grace in future to carry out more, formal research.

In the meantime, there is, I think, likelihood that many PDAers have an instinct to mask, as opposed to many non-PDA autistics who only mask if coerced to do so, and feel miserably oppressed as a result.
Now, I think there’s a very important point to bear in mind here: while autistic children might appreciate being told they can express themselves as they wish; the same message may confuse a PDA child
I want to reiterate that not all PDA, and general autistic children are the same. Far from it! But there does seem to be evidence that a significant proportion of PDAers mask, and believe this a natural thing to do; and that this differs from what general autistic people have reported

My daughter, for example, communicated to us, her parents, from the moment she could do so (about 2-years-old) that she was OK, when she very clearly wasn’t. On one occasion, for example, she had tried and bashed her head against the door frame. She had a gash on her forehead and tears streaming down her face. We rushed to comfort her, but this caused her to panic and insist that she was OK. We didn’t want to panic her, and wanted to agree with her; to say “oh good, you’re OK”, but we also wanted to comfort her for the physical pain she was adamantly denying. It was very hard to parent!
I resorted to holding my arms wide for her and sitting calmly so she could choose to come for a cuddle; which she did.

Now, in case you’re wondering, we never reacted negatively to our daughter for crying and expressing pain. Her desire to mask it appears to have been a natural instinct.

I had a conversation with her about this a couple of weeks ago as it happens. She’s now 9.  I told her about how she used to say she was OK after painful toddler injuries, when she clearly wasn’t, and how it had been very hard to respond to her, because we’d wanted to comfort her. She thought this was funny. We’d got to talking about how we both hide if we are hurt. We shared stories of childhood injuries we’d tried to conceal.
One story I told her about a time n the school playground when  was about six, and ate a square-shaped chewy sweet which got stuck in my throat, with the corners digging in so it really hurt and I could hardly breathe, but I did all I could to behave as if I was fine. I have no idea why.
A story she told me was of falling over in the playground when she was in year one and cutting her knee badly. She pulled her sock up over it to hide it, but the sock went dark with blood, so she kept her skirt pulled down low.
She told me that on an other occasion, this time in her garden, she fell into something and bashed her face, and her nose started bleeding. She sneaked upstairs and hid under her bed. She told me there’s still a dark patch of blood on the carpet there.
I asked her if she knew why she did this. She shrugged her shoulders and speculated that maybe it was because she didn’t want the attention. I said, “I’ve been wandering about masking. I think we discussed this before? It’s where some people, such as myself, want to hide what we feel and look calm and happy…” She cut me off, and said, “It’s definitely that!”

So, the type of masking we do, myself and Milly that is, is driven by not wanting other people to know or see what we really feel.
If a well-meaning teacher came up to Milly and told her they could tell she was masking, and doesn’t have to do it, she would total panic, and be upset that her masking had been spotted, and confused by the teacher telling her she could just stop doing it.

I’ll now describe to you a bit more of what my masking and social mimicry feel like to me.
My experience may not match everyone else’s, but I hope it shines some light onto what PDA masking can feel like.

I’ll also be exploring the positive side of masking.
I personally do not see masking as a bad thing at all.
I see it as natural, helpful and sometimes great fun :D

But before the fun, comes what I call the fear wall.
The fear wall is not fun at all.
It is a horrible, paralysing bubble of terror that leaps up to engulf me when I want to speak to people. I’ve been cursed with the fear wall since I was a very small child.
I never wanted it, nor knew how to make it go away.
It meant I couldn’t talk easily to people, even though I longed to.

I remember as a nervous, young adult with low-self-esteem, being lonely and depressed because of it. There were only ever a few people at any one time who I could talk to easily. My fear wall blocked me from communicating with everyone else.
However, it wasn’t always possible to see the few people I was comfortable with, and loneliness would set in.
This was often a panicked loneliness too.
I used to be terrified of being alone.
Sometimes I summoned  the resolve to expand my social circle and visit someone who wasn’t one of my safe people (the two or three people I was relaxed with).
I chose people I’d been able to talk to with relative ease in the company of one of my safe people.
I’d bravely arrange to meet this person, determined to overcome the paralysis of my fear wall, but - every time - my fear wall clamped down on me, leaving me panicked and scarce able to speak. I’d sit there awkwardly, wishing very hard that I was happy and relaxed and able to enjoy their company. But I couldn’t. It was excruciating. Very disappointing too.
I wanted to say and do the right thing, but I had no confidence in myself to know what what these things were.
There was one friendly girl, a bit older than me, who’d I’d known since my teens. I often walked with her up a hill - I’m pretty sure we did more than this! but this is what I recall. Every time, I found myself saying, “it’s a long hill!” Then instantly regretted having parroted myself from every other time we’d walked together up that same hill.
I wanted to talk freely and spontaneously, but, well, couldn’t.

Now let’s look at how masking has been able to rescue me.
I’ve gradually picked up, here and there, throughout my life, phrases; mannerisms, expressions and other snippets of social communication, that people appeared to respond well to.
I’ve never been good at small talk, but my scavenged communication toolkit has given me confidence that I can hold my own socially *enough* to permeate my fear wall, so that I could - as was my desire - interact with others.

How great is that?!

Now, some people view masking as shady and dishonest. After all, it entails hiding one’s true feeling behind a calm, happy front.
However, for me, masking enables me to break through my cursed fear wall and communicate (full stop).
And I do actually seek to communicate my true feelings.
It’s an odd one - I’ve become aware of this as I’ve searched for the words to describe how masking works for me - My masking enables me to communicate deep, genuine feelings that I could not otherwise describe. At all.

I’m trained as a person-centred counsellor
What I relished most in this training was being taught how to actively listen and communicate empathy; and having specialist tutor feedback about how I came across.
This was perfect for me.
I was also highly encouraged to be informed my self-awareness is well-developed.
I failed to pop out the end of the training schedule as a working counsellor. I got as far as the first term of level 4 (now permitted to call myself a qualified person-centred counsellor) and quit because of health and PDA avoidance issues,
But the social communication skills I’d Iearned have been a massive boost to me, and completely transferable into every day life.
My ability to mask broadly, so as to communicate with most people I meet with relative ease has been massively boosted by this training.

And, as I mentioned earlier, masking can be a very pleasant thing to do.
For example, we had a family holiday to Rabat in Morocco a couple of years ago. Rabat is not a touristic place, and I was ultra conscious of it being a deeply Islamic community in which women are required to be demure and keep their bodies covered. Dressed conscientiously, I sought to deport myself in a demure manner. Although this might sound like the antithesis of the freedom PDAers need, I actually had great fun stretching my wings into this new mask. It felt liberating and deeply satisfying.

I think the PDA traits of being comfortable in role-play, and liking novelty came into play here.
So, in this light, masking can perhaps be thought of as an aspect of the PDA trait of liking role-play… or is it the other way round?

Friday, March 6, 2020

The importance of undiagnosed adult PDAer voices

(Originally posted on the Free PDA blog)

A disturbing stance is emerging within the PDA community that undiagnosed adult PDAer voices are invalid. I am writing this blog post, with passion, to counter this negativity, which I see as discriminatorily ableist and destructive.

What is PDA?
PDA, which stands for pathological demand avoidance, is a neurotype that is classed as an autism spectrum condition because it entails social communication differences & rigid thinking. In addition to this, PDA also involves strong control-need; anxiety; intolerance of uncertainty; tendency towards fantasy & role-play; disregard for hierarchy & rules; obsessive interests often focused on people; ‘Jekyll and Hyde’ emotions, and impulsiveness.

My personal journey

I first learned of PDA in 2015, eighteen months after gaining an adult autism diagnosis. At this time, Googling “PDA” returned results about difficult children, and nothing at all about adults. I resorted to searching Facebook and found just one group dedicated to adult PDA: Julia Daunt’s Adult PDA Support Network. I was blown away to find, for the first time in my life, that I connected easily with a community. There were countless “me too!” moments voiced not just by me, but by many fellow members. I’d not experienced this anywhere else (including in  general autism groups). It was incredible. We, everyone of us, had spent our lives as anxious misfits unable to comprehend and articulate why it was that we couldn’t just *do* as those around us did; why we couldn’t just get on and flourish in careers; in home lives; in every f**king thing we were confronted with. However, in addition to our disablement, I also learned that we shared creativity, wit, compassion, bolshiness and excellent verbal ability.

I learned also that, like myself, 99% of members were not formally diagnosed. PDA can be diagnosed as a behavioural description of autism, but few assessment centres will do so. While some lack PDA awareness, others actively refute PDA's existence. A few private assessors will diagnose it, but the cost is prohibitive for most of us. Of all neurogroups, PDAers seem to have the biggest barriers against earning a wage. This was highlighted in the results of a cross-neurogroup traits study I ran in 2016: you can read about it here. I’ll describe the broader study in the next session.

Lack of diagnostic access and prevailing ignorance about adult PDA were sore points within the online community. The feeling I picked up was frustrated futility. Although we strongly felt we’d found our herd; that PDA explained who we were after life times of failing to fit our own expectations, the rest of the world was blind and deaf. Ignorance towards adult PDA was absolute. Health professionals folded their arms and told us to move on. Researchers focused on children only. Theorists described PDA from the researchers' child-focused, observer-driven findings. Even parents of PDA children failed to compute our existence. Facebook at this time had a range of PDA support groups, but all (bar Julia Daunt’s) served to support parents of PDA children. If adult PDAers voiced opinions in these groups, we were shouted down. No value was placed on our lived experiences. Even today, it seems not to have occurred to members and admins that, instead of being called PDA Support groups, they should be described as support groups for parents of PDA children. Thankfully, PDA Society became aware of this omission: having operated solely as a parent support service, they switched gears in 2018 to include support for adult PDAers.

Peer research

Going back to 2016, I felt a burning drive for adult PDA to be acknowledged and understood. Wowed by the plethora of shared ‘me too!’ moments, I instigated a big peer study which sought to pinpoint shared traits. I then asked PDAers and general autistics to rate how they felt each trait applied to themselves. It goes without saying that the vast majority of PDAer participants had no PDA diagnosis.

Grace Trundle, a doctorate student from University of Nottingham’s Centre for Forensic and Family Psychology, specialising in PDA, ran a T-test analysis on the data in 2019. She found that, of the 155 traits, PDAers scored significantly higher than general autistics for 105. You can see her T-test analysis here, and read more about my study here. In summary, a multitude of significant differences between PDA and general autism were revealed. Samples are:

  • I don’t respond to social status or age in the way I interact with people.
  • I am imaginative/creative.
  • I make up new names for people.   
  • I hate being ignored.   
  • I feel a need to be in control.
  • I can't cope with being told what to do.
  • I can't cope with being an employee unless given a lot of authority and/or autonomy.
  • I have my own set of ethics that do not necessarily correspond to society's, the law, etc.
  • I may leap to the rescue of a person or animal being abused.

The above sample of nine traits paint PDAers as creative; people-focused; needing a lot of autonomy; and champions of justice.

PDA by PDAers
My passion to communicate the global adult PDA community’s synergy inspired me to compile the first published book about adult PDA, PDA by PDAers. This book, like the big traits study, is based in enabling diverse adult PDAer voices to be heard, as it is compiled from contributions given by over 70 adults. I say in the introduction:

“No single one of us is more PDA than any other. There is, in my opinion, no ‘pure’ form of PDA. We are PDA, adhering to a certain pattern, in our own unique ways. To me, this collective description provides a broader glimpse of the adult PDA whole than can be provided by a single PDA individual”

PDA by PDAers was published by JKP in 2018; the same year that PDA Society added adult provision to their remit. A great year for adult PDA!

Feedback for the book has been astounding. Individuals and parents have excitedly told me that its content describes them or their diagnosed PDA child in uncanny and unsuspected depths: depths not described in the standard texts about PDA (derived from researchers’ observations of children).

It felt very clear that our combined adult PDAer voices provide important insight into the reality of PDA, that can inform individuals, parents and professionals alike. The adult PDA community, which is 99% undiagnosed, is therefore something I hold in high esteem, but protectively. I am all too aware that we are a minority group whom few have championed, and the majority (including service providers) have totally dismissed. I have never, however put myself forward as a representative of the adult PDA community, because I am very aware that PDAers are fiercely autonomous and resistant to hierarchy. Instead, I see my role as a peer advocate focused on facilitating all voices being heard.

Then came the discriminatory attack on the adult PDA community that prompted me to write this blog; and, in fact, co-found the Free PDA initiative. The attack runs thus:

The views of the adult PDA community are invalid because most members are not diagnosed. Further, listening to the adult PDA community is dangerous because their undiagnosed opinions may give a false impression of what PDA is. Undiagnosed adults should therefore be barred from participating in research studies.

Now, while this argument raises the valid point that self-identifying PDAers may not in fact be PDA at all, to my mind it misses several key points:

  • PDA understanding is still in its infancy. No one, including top notch researchers and theorists have a full understanding of what PDA, and neurodiversity in general, actually is.
  • People who actually are diagnosed as PDA, may in reality be misdiagnosed
  • Academic research cannot move forward swiftly without guidance from 'experts by experience’ (I’ll be talking about this in more detail in the next section).

In addition, this exclusive attitude – that only diagnosed PDAers should be permitted voices – is highly ableist and discriminatory. As it stands, only people who are rich or extremely lucky can access assessment for PDA.

As we have seen, the combined voices of the adult PDA community have already proven their validity in that parents of diagnosed PDA children not only connect to our reported experiences, but are enabled to understand their children more fully.

Trying to silence us would therefore cause much more harm than potential good.

Undiagnosed PDA voices informing formal PDA research
Furthermore, positive results I gained from peer research into neurotype differences in social mimicry and masking alerted Grace Trundle to carry out formal research in 2019. Grace presented her findings at a conference I co-organised with Spectrum Savvy and Julia Daunt in Bristol in February 2020. Excitingly, her findings confirmed what I had found through peer research: PDAers carry out more social mimicry and masking than general autistics.

Grace Trundle at Valuing Adult PDAers' Voices conference in Bristol Central on 11th February 2020

She elaborated:

"What I research is often not my lived experience. This means my understanding of a topic only reaches a certain level. I can read all the research, I can speak to individuals with the population I’m studying, but I will never truly understand what is it like to live with a condition or an experience. And this limits my ability to conduct research that benefits the population.

An Expert by Experience is an individual who has personal involvement with services, conditions, or specific experiences... Those with experience of [a condition] ethically should have a say in research that is about them and has an impact on them, but also because involving those from the target population in the research design may help ensure that the study is conducted ethically and sensitively. This may include the terminology that is used which can often be the topic of debate.

Another argument is that research is often supported through public funding and so it can be argued that the public should have some influence over it (Thompson et al., 2009).

Due to their expertise, they may provide new insights that have not yet come to the attention of the researchers

My experience of working with adult PDAers thus far has demonstrated many benefits:

By working with adult PDAers, who are experts by experience, I have gained a unique and often humorous insight into the world of PDA

We can draw each others attention to how things are perceived from different perspectives – providing each other with new information

We can promote the doing with rather than doing on approach and I can experience the benefits of this type of approach

We can develop a mutual respect for the expertise of each other

As researchers, we are still learning about PDA, especially PDA in adults. With so much unknown or unanswered at present, it would be useful to involve the PDA community in developing research ideas. I am unaware of whether this is currently happening, but reflecting on my thesis experience, the idea was influenced and somewhat generated by consideration of expert by experience reflections and reports."

Monday, December 2, 2019

"Pathological demand avoidance" or needing to be free?

"Pathological demand avoidance" (PDA) is the name of a life-long neurological condition.

The term was coined by Professor Elizabeth Newson, who first identified the condition in the 1980s.
In addition to the trait of pathological demand avoidance, PDA entails:
High anxiety, control-need, use of social strategies, sociability, mood swings, comfort in fantasy & role-play and obsessive, often people-focused behaviour (link). 
And also:
Disregard for social hierarchy, masking, love of novelty, dislike of routine, intolerance of uncertainty, creativity, quirky sense of humour, and (not always) a drive to rename people, animals and things.
PDA Classification
PDA was initially classed as a pervasive development disorder, but reclassified as an autism spectrum condition after the spectrum's definition was broadened in 2012 to include any neurotype featuring social communication differences and rigid thinking. You can read more about the history of PDA and its classification. There is further information about the history of PDA on PDA Society's website (link).

Contention within the PDA community over the condition's name
The name "pathological demand avoidance" is, however, contentious amongst adult PDAers:
  • Some are fine with it.
  • Some hate the term "pathological".
  • Some believe this name misrepresents the condition.
For my own part, I started off fine with the name, but have since come to question it's appropriateness. I'll explore the three stances (the name's OK; the "pathological" part of it is bad; and the whole of it is misleading) in this blog post, which includes comments from fellow PDAers (quoted with their consent).

1) Those who are fine with the name
Some of us argue that "pathological demand avoidance" is an apt name for our condition. They say that changing the name would take away the small amount of recognition PDA has so far achieved. Furthermore, PDA Society would have to change their name.

Julia Daunt, a PDA advocate, who's PDA was diagnosed by Professor Elizabeth Newson when she was a child, says: 
The name is the name. End of. No debate to be had in my opinion. To change the name would cause a backwards step and would create confusion. It would also be disrespectful to Liz [Newson] in my opinion. 

Also Pathological covers it perfectly. People need to stop being silly over the name and focus on the bigger picture - raising awareness!
Fellow adult PDAer and advocate Riko Ryuki says simply:
I agree with Julia
2) Those who hate the term "pathological"
Other members of the PDA community are strongly opposed to the term "pathological" because of its negative connutations, and refuse to have the label applied either to themselves or to their children.

The alternative name "extreme demand avoidance" was put forward as a more acceptable term (link) and promoted by researcher Liz O'Nions who developed the EDAQ (extreme demand avoidance questionnaire) to measure PDA traits in 2013 (link). Some PDAers, such as Kamala McDaid prefer this:
I prefer “extreme demand avoidance” in some ways because some people think “pathological" means that it’s a mental health condition/illness which ASD and all it subtypes aren’t, so changing the name would stop those people thinking that we were “mad in some way ”
The alternative term "EDA" has, however, been vehemently rejected by other adult PDAers. Some, myself included, argue that "extreme" gives the impression of a lifestyle choice (like enjoying extreme sports) and fails to convey the hard-wired, involuntary nature of our avoidance. Jenny muses:
I don't like EDA either I'm afraid. But I agree the word pathological is bad. It's like 'personality disorder', a horrible term.
Others, such as Carrie Prior are attached to the acronym PDA, but not the word "pathological":
I dislike the word Pathological, as it tends to be negatively associated with the term Pathological Liar, something that PDA-ers are definitely not. 
 Kamala McDaid, echoing Julia Daunt, goes on to say:
But as PDA is a LOT more than just demand avoidance, and in someways the demand avoidance is a “symptom" of our anxiety and need for control, EDA still doesn’t explain the condition any better than PDA, but I am not sure of what could be an alternative and at least PDA is starting to be recognised by experts, professionals and the public and a name change might undo some of the great work already done by advocates and those with the condition, and delay the understanding and acceptance by the majority that we need.
Adult PDA blogger, Emily Wilding, muses in a post entitled what is demand avoidance and when is it pathological?:
Pathological. I know it sounds awful, and it does because we associate it with things being wrong or diseased in some way, and it can mean this. But pathological also means "being such to a degree that is extreme, excessive, or markedly abnormal" (Merriam-Webster Dictionary). It simply means in this case that the demand avoidance is atypical. Whilst I don't like the fact that the PDA neurotype is named after the demand avoidance that is experienced by the PDAer, I do agree that the demand avoidance experienced in PDA is extreme, excessive and completely different in nature to other demand avoidance, which is where the huge misunderstanding comes.
3) Those who believe the name misrepresents the condition.
In the quote above, Emily Wilding expresses ill-ease at our neurotype being named only for our avoidance. It can be argued that the phrase "pathological demand avoidance" is misleading because it names only one of a range of traits associated with PDA. For example:
Elisa: My concern is mainly that the pathological demand avoidance part of PDA is just one part of something much greater and more complex, and also that it is the most negative part. It doesn't sit right with me that the name should be that. Unfairly named.

As for pathological, I get the meaning, so for me it isn't an issue, but it is perceived as a very negative term, which is the last thing we need, as PDA people are already viewed as difficult.
Many members of the wider autism community argue that PDA does not merit distinction as a subtype within the autism spectrum because all autistics can be demand avoidant. I believe that our condition being named for the trait of avoidance only, coupled with its autism spectrum classification, has caused much of this confusion. Emily Wilding provides a detailed examination of PDA versus general neurodivergent avoidance in her blog post.

So what else to call it?
As  PDAers have a high need for personal control, are creative, and often driven to invent new names, it should come as small surprise that alternative names for PDA are frequently proposed by members of the community. Here are a few:

John Cannon: 
"let me say no first, then go away for an hour and think about what you have just asked me" syndrome.
Carrie Prior:
Ironically, I do actually like the acronym PDA; if only there was a more positive word beginning with P that could better sum up the demand-avoidant profiled person in a more inclusive way. 
Something to do with personal autonomy?
I like autonomy driven profile! 
Emily Wilding:
Pervasive Drive for Autonomy
Jessica Fox: 
I agree with Emily Wilding. Pervasive Drive for Autonomy, or even Pervasively Driven Autonomy, is a much better holistic descriptor of the neurotype than focusing on just one aspect of the reaction to the triggers of demands in an authoritarian society that prizes the following of arbitrary rules and commands. 
Louise Burrell:
"Pressure Detonation Anxiety" was the best I could come up with, but it doesn't come close to describing what PDA really is. I love Pervasive Drive for Autonomy, Emily's one, above (and the piece about it). Also, Protective Demand Avoidance was another good one (can't remember who penned it). 
Having said that, "Pathological" is a bit useful for distinguishing between PDA and other types of demand avoidance. Something about it really validates just how widespread and significant the DA is. People really seem to struggle to understand and believe that it is much more than not wanting to do an unpleasant task
I like Pervasive Drive for Autonomy. Autonomy is as important as air for me to survive.
Emily Wilding:
I do agree that our demand avoidance continue to be referred to as pathological, just not the whole neurotype described for this one attribute.

I personally agree with Julia Daunt, Riko and Kamala that changing the name of our condition would erode the limited awareness our condition has managed to gain. I do, however, accept that the term "pathological" is alienating for many, and this cannot be good for acceptance and respect. Like Carrie Prior (and many others I've spoken with) I am personally attached to the acronym "PDA." I identify with those three syllables without spending time pondering what each letter stands for: In my heart I'm a PDAer (not a pathological demand avoider). I also see that naming our condition for just one, negative trait is detrimental to PDA awareness and acceptance: many assume that PDA comprises demand avoidance and autism only. So might it be viable to hope for an officially-endorsed rebranding of our condition from "pathological demand avoidance" to a new term sharing the same initials, perhaps "pervasive drive for autonomy" (as Emily Wilding suggested)? This leads me to the question of who, if anyone, is actually in control of our condition's name? As far as I'm aware, the authorities here are PDA Society, National Autistic Society and various PDA-focussed professionals/researchers such as Phil Christie and Liz O'Nions. All of the above are, I believe, receptive to the views of the adult PDA community, so the possibilty of changing our condition's name seems achievable. The main hurdle I foresee comes, in fact, from my fellow adult PDAers, who will likely feel continually driven to contest each and every name for our condition! I truly love the free-thinking, personal control-needing, name-inventing, label-hating creativity of PDA.